tag:blogger.com,1999:blog-77098916924540528832024-03-13T12:04:19.786-04:00STOP POTS (and Dysautonomia!)A site to raise awareness, support, and be a science based resource for people dealing with POTS (Postural Orthostatic Tachycardia Syndrome), which is a type of Dysautonomia. Lots of information no matter where you live- with tips/tools for navigating doctors, family, friends, and life with POTS/Dysautonomia. I'm on a mission to get the word out, help people find their POTS cause, and also improve treatment options and support here locally in Virginia, MD, and DC. All locations welcome :)Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.comBlogger62125tag:blogger.com,1999:blog-7709891692454052883.post-55660996697533696182018-05-29T08:52:00.000-04:002018-05-29T08:52:41.039-04:00A Happy Healing Update! Finding Freedom with Neuroplasticity <b>Why, hello there!
It's only been 4 years since I last checked in! </b><br />
<br />
I've been hiding for a bit during this healing journey I'm going to start blogging about <a href="https://neuroplasticityninja.blogspot.com/" target="_blank">over on my new site</a>, and finally feel comfortable sharing the mountain of thoughts that have accumulated about healing from chronic illness, what's worked for me, and how it's worked so fast.<br />
<br />
<b>I'm really happy to report that after all that time, I'm healing. </b>As in, I have zero symptoms! The long list of junk is GONE, and it's stayed gone for months now. I'm out with my family driving, walking, hiking, enjoying the beach, fishing, traveling, and am back taking classes, and more! It's amazing! <br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-9ZjWqdxGV2g/WwyWGzsgJhI/AAAAAAAAct0/jZlD6B8mZx85JVEhpBlQrNwsAb_GBQJMwCLcBGAs/s1600/20180506_120345.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="631" data-original-width="841" height="240" src="https://2.bp.blogspot.com/-9ZjWqdxGV2g/WwyWGzsgJhI/AAAAAAAAct0/jZlD6B8mZx85JVEhpBlQrNwsAb_GBQJMwCLcBGAs/s320/20180506_120345.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A recent anniversary trip with my husband (May 2018), and we walked and hiked everywhere! </td></tr>
</tbody></table>
How has this happened? I was fortunate to be introduced to <i>neuroplasticity</i> about a year ago, and then in my true science nerd form, I studied up and read everything I could find! Simply put, neuroplasticity is the brain's ability to change. It's how people recover after strokes, regain feeling after nerve damage, and heal from chronic illness. You can find links to the programs I've used over on my new healing blog <a href="https://neuroplasticityninja.blogspot.com/p/neuroplasticity.html" target="_blank">HERE</a>, and an ever expanding reading list <a href="https://neuroplasticityninja.blogspot.com/p/blog-page.html" target="_blank">HERE</a>. I won't be answering emails, messages, or anything from this site as I transition over.<br />
<br />
I did a few programs designed for healing from chronic illness, and though they were a great introduction, ultimately found them lacking in various areas, but am grateful for the principals they taught and doors they opened. My major, tangible healing started just this past Feb (only 4 months ago) with a neuroplasticity pattern interrupt called Eutaptics/FasterEFT and working intensively with a practitioner, combined with mindfulness principals and other neuroplastic exercises. You can read up on all this <a href="https://neuroplasticityninja.blogspot.com/p/neuroplasticity.html" target="_blank">HERE</a>.
A great book to learn and start with about the ability of the brain to change and heal is The Brains Way of Healing by Dr. Norman Doige:
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<span style="background-color: white;"><span style="color: black;"><a href="https://www.amazon.com/gp/product/014312837X/ref=as_li_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=014312837X&linkCode=as2&tag=clairesblogs-20&linkId=68243835a1839081ba9e9df6152a7747" target="_blank"><img border="0" src="//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&MarketPlace=US&ASIN=014312837X&ServiceVersion=20070822&ID=AsinImage&WS=1&Format=_SL250_&tag=clairesblogs-20" /></a><img alt="" border="0" height="1" src="//ir-na.amazon-adsystem.com/e/ir?t=clairesblogs-20&l=am2&o=1&a=014312837X" style="border: none !important; margin: 0px !important;" width="1" />
</span></span><br />
<br />
This
post is the only place I plan to touch on my past, as I'm completely
focused on being present and celebrating success. I've let go of all the
labels that used to define me, and the identity of illness no longer
dictates my life or state of mind. It's so freeing! One comes before the other, I've found.<br />
<br />
<b>So, whats been happening for 4 years? (insert dramatic pause)</b><br />
<br />
Well, I stopped blogging in 2014, when my ex husband unexpectedly
decided he was done, and we separated and divorced. It
was a scary time, I could barely feed myself, let alone imagine being a
single mom living on my own. I'd spent almost 15 months inpatient in
the hospital within 3 years (9 months continuous), had just gotten a second mediport, was in a power or reclining wheelchair, even at home,
had a brand new diagnosis (Lyme Disease), and my little loves (2 and 6
year olds) that needed me, one of which had a Lyme/Bartonella diagnosis as well. <br />
<br />
I moved out and
experienced a brief but triumphant remission in late 2014/early 2015,
when I just decided that I was going to get well. I had no clue how I'd
care for my kids, cook, clean, let alone even get out of bed. On faith
and a gut feeling, I left all illness support groups on Facebook, shut
down my former nonprofit, Dysautonomia SOS, and stopped blogging about
illness. I cut dairy and processed sugar out of my diet (had already
been gluten free because of gastroparesis for a decade), and was getting
increased daily IV saline infusions through a new mediport.<br />
<br />
I
moved into my new one level, manageable small and wonderful home, and
did not look back. I did not use a wheelchair inside, if I had to
crawl, I crawled. I had chairs all over, including the kitchen. I was
blessed to have a home health aid a few times a week to prep food, clean, and
do laundry, as I could not. But this enabled me to cook seated, and
during my rotating schedule with my ex caring for my kids 3-4 days a
week, I started to heal. I was blessed with a ton of "starting over"
gifts by my family, friends and the amazing people I'd met in person and online
through my nonprofit work and support groups. My parents got my kids to
and from the bus stop, and my two elderly Yorkies had a lovely backyard
to play in, as I could not walk them.<br />
<br />
From August 2014 -
January 2015, I reconditioned. I lost 80 pounds. I started walking, I
cooked, I continued to run my Etsy shop that I had started from bed from
my new garage studio, and made fun crafty stuff and sold craft
supplies. I became confident, and slowly started venturing out with
friends. I used my wheelchair for outings, but could walk up the stairs
to my parents house! Lots of little victories became bigger victories,
and soon I went on my first outing alone. I was a single mom without
many in person friends, feeling better, and was ready to meet new
people.<br />
<br />
So I went. I started living! I kept
reconditioning and building my confidence, and by spring of 2015, I was
driving, taking care of my kids, attending their events, shopping,
eating out, drinking in moderation, dating, and enjoying a new found
social life when my kids were with their Dad. I stopped seeing most
doctors, and just enjoyed life! I met my forever husband! It was wonderful!
BUT - I was reliant on IV fluids daily through that mediport, and had a
very restricted diet.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-hzK7ERH3gnM/WwyFyA3ohhI/AAAAAAAActQ/cEzKNYj-gzwP6xW4JEcYUcKgrIFQhyBEACLcBGAs/s1600/IMG_0816.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-hzK7ERH3gnM/WwyFyA3ohhI/AAAAAAAActQ/cEzKNYj-gzwP6xW4JEcYUcKgrIFQhyBEACLcBGAs/s320/IMG_0816.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At a Pirate Festival with my kids - walking for hours! June 2015, So fun! </td></tr>
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In Sept of that year, I had surgery to replace the mediport after my skin broke down around the site. I was negligently given medicine I was allergic to, and it landed me back in a wheelchair. I can't go into much detail because we actually settled out of court. Needless to say, it was extremely traumatic, and I was devastated. I was not quite as bad as before, but I had an onslaught of symptoms that waxed and waned over the next few years, always needed the wheelchair when out, and was just so over it all! I'd had my taste of freedom from illness, and then to cope with being so sick again was really tough.<br />
<br />
The one amazing thing (beside my kids and the support of my family and friends) that happened during that time was that I met my loving, kind, funny, wonderful husband - and we continue to journey together today. He has been my rock, and when I went from healthy and functioning to very sick and needing care, he didn't flinch. I was devastated to get married with a wheelchair around, but I was able to get up and have our first dance for a minute or so before needing to rest. We had a great night and I was up and moving for a good portion of it, and best of all, I married the most amazing man!<br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-KmwhS8i-W7I/WwyHnf3QotI/AAAAAAAActc/Ao6wfb8Cr2UUOMFI_0SghziclKCEWrJAACLcBGAs/s1600/015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-KmwhS8i-W7I/WwyHnf3QotI/AAAAAAAActc/Ao6wfb8Cr2UUOMFI_0SghziclKCEWrJAACLcBGAs/s320/015.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We had a magically geeky wedding! Very blessed to have our happy little family!</td></tr>
</tbody></table>
In 2016, not only did we get married - I attempted to push past my illness and open a creative studio. It was a very brief magical time, my husband and I and a team renovated a space and I was there in my wheelchair, determined to push through, overworked and in denial about my health. It ended up closing just two months later after I had to take emergency sole custody of my kids and have had them full time every since. The pressure and stress and exhaustion from that transition was not sustainable with my health and a new brick and mortar business, and I became even more sick and we had to close. Again, it was heartbreaking and traumatic at the time, but now, I'm so grateful for the way things played out! I had to break the illness cycle and couldn't have done that otherwise.<br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-1XG1lAHxGgA/WwyJK_9y35I/AAAAAAAActo/70hz7uO_LPotTM8MrZ8PgkPINznU7hjOACLcBGAs/s1600/002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://4.bp.blogspot.com/-1XG1lAHxGgA/WwyJK_9y35I/AAAAAAAActo/70hz7uO_LPotTM8MrZ8PgkPINznU7hjOACLcBGAs/s320/002.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My old studio!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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2017 was one of the hardest years I've ever faced, I think in part because I was just so tired of the rollercoaster. I wanted off. I didn't know how to get well. I was terrified of Lyme treatment because I reacted to all the meds and supplements, I was running 1500 mls of saline a day through a mediport just to be able to get to the bathroom myself, and I still needed the help of an aid to prep food, do laundry, and she did all the cleaning. I was totally reliant on others, again. My husband had to come home to be a full time caregiver at this point. It was devastating.<br />
<br />
(I promise, this all has a happy ending/new beginning!)<br />
<br />
In March of that year, my mediport was red, swollen, and I felt flu-ish and had a low fever. After 4 trips to the ER, positive cultures, and still being sent home multiple times because I didn't "seem sick enough" I was finally admitted and tested positive on 4 out of 4 cultures as having sepsis. It was quite the fiasco, and an exhausting and scary week, that led to another week+ of inpatient time, a port removed where the meds didn't work and I felt the whole thing being carved out of my chest, and then a few days later a new port placed, where luckily I was put under and didn't feel a thing. Heavy IV antibiotics and reactions were no fun. I went home, only to end up right back a few days later with what turned out to be a massive DVT (clot) on the new port blocking my one remaining jugular.<br />
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<a href="https://3.bp.blogspot.com/-cRgt8MlQ4Mw/WwyhMOD-cII/AAAAAAAAcuE/wsvXEe_okxE30CWemvMSrqer1WIoE52hQCLcBGAs/s1600/20170401_124509.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="631" data-original-width="473" height="320" src="https://3.bp.blogspot.com/-cRgt8MlQ4Mw/WwyhMOD-cII/AAAAAAAAcuE/wsvXEe_okxE30CWemvMSrqer1WIoE52hQCLcBGAs/s320/20170401_124509.jpg" width="239" /></a></div>
<br />
Again, it was an exhaustive fight for care, as now both jugulars were blocked, my face was swollen with fluid, and I was fainting from just sitting up, and the pressure in my head was unbearable. I ended up another 10 or so days inpatient for that, then was flat on my back for months until enough clot had resolved and blood flow resumed a bit from my head. It sucked. I was using my wheelchair in my home if out of bed (rarely), and had to be held up on the toilet because I was blacking out so much. I was desperate and hopeless. At one point I needed a mediport study, and my heart went into V-tach and a crash cart was called, and I was alone in the ER, thinking I was dying. So much trauma and fear, it's hard to put into words.<br />
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<tr><td class="tr-caption" style="text-align: center;">Flat on my back for months. My doggies didn't mind, at least :) Glad they like sleeping as much as I did!</td></tr>
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I was mid May when a friend told me about a program called DNRS (the Dynamic Neural Retraining System), which taught neuroplasticity and how to get "unstuck" from being in constant fight or flight, which eventually causes inflammation, immune issues, autonomic issues, pain, and all kinds of things. I started reading about how our brains can become stuck in a loop, and we can do exercises to "unstick" them, the same way people heal after having a stroke. So on faith and a credit card, I ordered the DVD set, and started reading some of their recommended books. The scientist in me was skeptical but cautiously optimistic, because the more I read, the more it resonated with me, and the more the science made sense. So I dove in.<br />
<br />
I completed the DVDs and started following the program and within days saw improvements. I was up more, feeling mentally better, and for the first time in a while....I had HOPE. I will be forever grateful to DNRS for that, and opening the door to neuroplasticity for me. After a few weeks, I was walking again, and getting out in my wheelchair. The noise and sensory sensitivity was gone! I rode in the car again without pain and dizziness! That was huge! I was out in my garden, and even helped build a table with my husband. I added back in a few foods! Things were going really well, and I kept reading and learning from all the pioneers in neuroplasticity, convinced that this was my way out.<br />
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<tr><td class="tr-caption" style="text-align: center;">Gardening! With a backpack and IV fluids pump, but still! Felt good. </td></tr>
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<br />
Well, unfortunately, in July I somehow ended up with another blood stream infection. Again, my immune system was confusing the doctors - I had no fever but felt sick, and the port was swollen and red. This time we went to a university hospital a few hours away, and we were sent home! UGH! The same frustrating merry go round ensued, but eventually we got the call that the cultures were positive, and to come back to be admitted. So, my angel of a Dad drove with me the two hours and it was off to the races.<br />
<br />
This time it was a gram negative bacteria and required different antibiotics, all of which I ended up having anaphylactic reactions to. They pulled out my port and put in a PICC line, because I wasn't a candidate for ports anymore with all the clots in my chest and both jugulars. I spent another week inpatient, and bless my Dad for staying with me, because I was scared. I'd had so many reactions, so many meds, so many steroids, and was having more heart arrhythmia's, more crash carts, my blood work was wacky, the doctors didn't know what to do, and I was just over it and wanted to go home. <br />
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<tr><td class="tr-caption" style="text-align: center;">Visiting when I was back in the hospital, losing our minds! I was hours away this time, it was tough. I missed my family. </td></tr>
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So I convinced them to let me go home. But, at home, the med reactions got worse, and finally after
breaking out in hives with a more intense and scary anaphylactic event -
I called it a day with the antibiotics. I went to the ER and got more
steroids, more IV Benadryl, and we just prayed that the 7 days were
enough to knock out that infection because no one knew what to do, and I was at my wits end.<br />
<br />
<i>(I pinky swear promise, we're almost to the good stuff! Stick with me!) </i><br />
<br />
When all of this was happening, I had to stop DNRS and their system of brain training. The exercises were making me much worse, and after the course of steroids to treat the reactions, I had what was later called steroid psychosis, which was a very detached kind of depression I'd never experienced before. It scared the hell out of me. My brain chemistry felt "off" and I spoke with a DNRS coach, and didn't find any help and just couldn't do the bootcamp style program at all.<br />
<br />
THEN (yes, there's more), someone suggested we get our home tested for mold, that maybe that was why my immune system was so poor, and come to think of it, maybe that was why my son had strep 9 times that year, along with mono. Maybe that was why my daughter had chest pain at night and everyone just seemed to feel crappy. So we did. Low and behold, in late October, mold testing by a Shoemaker (mold literate) friendly company found toxic mold growing in both kids rooms - the result of water damage in 2015 that wasn't properly remediated. We had no idea. It was hiding behind furniture along my son's wall, and was under the carpet and along baseboards in a few other places in the kids rooms. I was horrified, because who knew how long that had been there, and now to add mold to that long list of health crap? UGH. My poor kids. Mom guilt ensued. <br />
<br />
So, we had to leave. We ended up moving 8 times in 2 months, and spent a lot of time in oceanfront hotels and bouncing around rental homes down at the beach near us. I won't bore you with how one rental home was flooded under the sink and covered in black mold and we had to leave the day after we got there, or how we had to leave another rental home over Thanksgiving and head back to the hotel because it was booked. Round and round we went, living out of a few bins, trying to maintain a schedule, and it was exhausting with two kids and two senior dogs, and we all were hanging on by a thread. We tried to make it fun, called it #moldcation and told the kids it was an adventure, and we had some really great views along the way. But it was tough. I was sick. We were all so very tired.<br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-M7UVbW8P1S8/WwyuLegnWaI/AAAAAAAAcuo/UQB_6cPx1ikvZOCwhsuoeoPMILhrfEQ9gCLcBGAs/s1600/20171103_105319.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="211" data-original-width="158" src="https://2.bp.blogspot.com/-M7UVbW8P1S8/WwyuLegnWaI/AAAAAAAAcuo/UQB_6cPx1ikvZOCwhsuoeoPMILhrfEQ9gCLcBGAs/s1600/20171103_105319.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nice view.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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My kids came down with strep and croup while we were crammed in to a tiny hotel (which was really a nice hotel, thankfully, but 4 of us sleeping in one room for 16 days with sick kids was a bit cramped)! I needed 3 PICC line replacements within 2 weeks at one point, lots of ER trips, and was not leaving whatever room we were staying in much. The depression got worse, no matter what I tried. We just kept moving and going, doing the best we could.<br />
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<tr><td class="tr-caption" style="text-align: center;">Really nice view! Still would have rather been home. </td></tr>
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At some point, I started looking back in to other neuroplasticity programs. Something, anything to feel better - I really felt it was the key, I just didn't know how to use it with my brain feeling like depressed mush. So, after reading up in a Facebook Group for brain retraining, I ordered The Gupta Programme, and immediately it clicked with me, and in mid November I started his meditations and support techniques. I was too scared to do actual brain retraining exercises after the swings with DNRS, and really felt I just needed a way to calm myself and cope with scary new symptoms like SVT (heart stuff). Through our moving and chaos, I watched his DVDs and started meditating and learning mindfulness bit by bit. I started to feel more calm and able to cope within a few weeks, and that spark of hope came back. It's very different from DNRS, very laid back, and I really liked his funny and calming demeanor. My head started feeling clearer again. <br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-Geuh9EQj6V8/Wwyv1lIXNNI/AAAAAAAAcu8/4A-f3DGe0BMIynX7Q1mYVtoG2K_QzjUZwCLcBGAs/s1600/20171111_171543.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="631" data-original-width="841" height="240" src="https://4.bp.blogspot.com/-Geuh9EQj6V8/Wwyv1lIXNNI/AAAAAAAAcu8/4A-f3DGe0BMIynX7Q1mYVtoG2K_QzjUZwCLcBGAs/s320/20171111_171543.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tired, but togther, after one of the many moves.</td></tr>
</tbody></table>
We finally went home 4 days before Christmas. Our home had been remediated and emptied, and just a few pieces of furniture were there. We all had new beds, so that was good! My kids rooms were a loss, but something in me felt like we shouldn't throw everything away. I'd been reading about mold avoidance, and how it made people worse, and then reading stories of hope and recovery using brain retraining. We stuck all the kids toys that were salvageable in my parents garage, along with all our other salvageable stuff, to be cleaned as we could. Actually, it was my husband that had to do all the cleaning - because the mold strain in our home was Penicillin/<span class="st">Aspergillus, and I'd been deathly allergic to penicillin and the entire family of meds since childhood (that family of antibiotics were what were causing all the reactions earlier that year). I was reacting to all kinds of stuff from our house, but I knew in my gut at some point I could fix it like others had. </span><br />
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<a href="https://4.bp.blogspot.com/-2QuJbaTlcB4/Wwyyq4ZS_rI/AAAAAAAAcvI/-6uA-6Z95NIM8Tm-tRsexb0matoujkSaQCLcBGAs/s1600/20171223_204315.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="631" data-original-width="473" height="320" src="https://4.bp.blogspot.com/-2QuJbaTlcB4/Wwyyq4ZS_rI/AAAAAAAAcvI/-6uA-6Z95NIM8Tm-tRsexb0matoujkSaQCLcBGAs/s320/20171223_204315.jpg" width="239" /></a></div>
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<span class="st">So - we were home! We had a lovely Christmas, and I started brain retraining exercises and continued meditating and using the other supportive tools the Gupta Program provides. On January 11th, I committed to 6 months of daily retraining, joined an accountability group, and got to "work". By Feb 1st, I still hadn't seen many gains (but did feel better mentally!), so I added in another program I'd been researching called <a href="https://fastereft.com/course/7-day-fastereft-course-free/?ref=362" target="_blank">FasterEFT</a>. I knew I needed to address the 16 years of medical trauma, divorce, ups and down, and the grief and loss I felt. I started working with an amazing FasterEFT practitioner in combination with taking certification classes, and still doing brain retraining and Gupta style meditation/mindfulness, and the rest is history! </span><br />
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<a href="https://3.bp.blogspot.com/-_8VtR-nNpiE/Wwy0NzgwX0I/AAAAAAAAcvU/ZYimWnMgLgImGZ0Jtpm0nS0nBoLlt_YagCLcBGAs/s1600/IMG_20180401_180342_370.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="631" data-original-width="631" height="320" src="https://3.bp.blogspot.com/-_8VtR-nNpiE/Wwy0NzgwX0I/AAAAAAAAcvU/ZYimWnMgLgImGZ0Jtpm0nS0nBoLlt_YagCLcBGAs/s320/IMG_20180401_180342_370.jpg" width="320" /></a></div>
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<span class="st">By Feb 21st, after 6 intense sessions, I woke up and did not feel sick anymore. I don't know how else to describe it. But I haven't been sick since! Sure, I have had major reconditioning to do, and anxiety and fear to deal with, and my body needed to heal. There have been swings. But I am healthy now, and out living, and it's only the end of May! My PICC line was removed April 10th, and I've had NO fluids since! After 7 years of daily fluids, that pretty damn exciting! I've been living life again after all these years, and feel so very blessed. It's been a whirlwind of amazing, and I hope you'll head over to my <a href="https://neuroplasticityninja.blogspot.com/" target="_blank">new blog</a> to learn more, be inspired, and join me in healing! </span><br />
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<span class="st">I'll leave you with a reading assignment, here's another great book about the power of neuroplasticity by a leading author in the field: </span><br />
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<a href="https://www.amazon.com/gp/product/1401944590/ref=as_li_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=1401944590&linkCode=as2&tag=clairesblogs-20&linkId=6601ff17ac82040cfcd34b9caba37ecc" target="_blank"><img border="0" src="//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&MarketPlace=US&ASIN=1401944590&ServiceVersion=20070822&ID=AsinImage&WS=1&Format=_SL250_&tag=clairesblogs-20" /></a><img alt="" border="0" height="1" src="//ir-na.amazon-adsystem.com/e/ir?t=clairesblogs-20&l=am2&o=1&a=1401944590" style="border: none !important; margin: 0px !important;" width="1" />
<span class="st"><br /></span>
<span class="st"><br /></span>
<br />
<span class="st">Thanks for reading! I sat down to write an
abbreviated version, and this all came pouring out - so I'm leaving it!
Hopefully it brings someone hope. YOU CAN DO THIS! Head to <a href="http://www.swinghealing.com/" target="_blank">SWING Healing</a> for more! </span><br />
<span class="st"><br /></span>
<span class="st">Peace and love, </span><br />
<span class="st">---Claire</span><br />
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<i>*this post contains affiliate links at no cost to you, with products and services that I love and have tried or read myself. I have no official affiliation with DNRS or Gupta, I was a paying "customer" and the reviews are my own opinions.</i>Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-9421493198103653702014-05-28T13:32:00.000-04:002014-05-28T13:32:30.424-04:00Find Your POTS cause: Lyme Literature Round Up<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-INblryqIZqY/Uvps_4nZ44I/AAAAAAAACyI/ds_ngVKe6N4/s1600/lyme.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-INblryqIZqY/Uvps_4nZ44I/AAAAAAAACyI/ds_ngVKe6N4/s1600/lyme.jpg" height="200" width="200" /></a></div>
As I posted earlier, after 11 years of being sick, 3+ of those REALLY sick, like non functional I-can't-take-care-of-my-kids-or-leave-the-house-and-am-in-a-wheelchair-and-bed-sick, I finally found out I have Lyme disease AND the lovely Bartonella (and probably as few others I'm being tested for). I finally started reading about Lyme, and reading the journal articles and history of this battle. It is summed up (the history of the battle/controversy/disease process) incredibly well in the book, which you should seriously consider reading.<br />
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<br />
The author was a science writer and highly skeptical of "chronic Lyme" and presents both sides, in what I found to be a very balanced and well researched way: <br />
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<a href="http://www.amazon.com/gp/product/1250044561/ref=as_li_qf_sp_asin_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=1250044561&linkCode=as2&tag=horizodesign-20">Cure Unknown (Revised Edition): Inside the Lyme Epidemic</a><img alt="" border="0" src="http://ir-na.amazon-adsystem.com/e/ir?t=horizodesign-20&l=as2&o=1&a=1250044561" height="1" style="border: none !important; margin: 0px !important;" width="1" />.<br />
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<a href="http://www.amazon.com/gp/product/1250044561/ref=as_li_qf_sp_asin_il?ie=UTF8&camp=1789&creative=9325&creativeASIN=1250044561&linkCode=as2&tag=horizodesign-20"><img border="0" src="http://ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=1250044561&Format=_SL110_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=horizodesign-20" /></a><img alt="" border="0" src="http://ir-na.amazon-adsystem.com/e/ir?t=horizodesign-20&l=as2&o=1&a=1250044561" height="1" style="border: none !important; margin: 0px !important;" width="1" />
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I am a <a href="http://www.pinterest.com/eklayre/" target="_blank">Pinterest Junky</a>. Unfortunately, journal articles on Pubmed don't work with Pinterst. So I am linking to a bunch of info here on Lyme Disease, and including some pictures purely for pinning purposes. I HATE the site of bug/ticks/etc... so these will be silly pictures! After, you can read me conjecture about how this relates to POTS/chronic illness if you like.<br />
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I'm going to do this backwards. Here are the sources for what I will write:<br />
<br />
<div class="contribs">
1. <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879353/?report=reader" target="_blank">Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic, Raphael B. Stricker and Lorraine Johnson</a></div>
<div class="contribs">
<br /></div>
<div class="contribs">
2. <a href="http://www.ncbi.nlm.nih.gov/pubmed/15581390" target="_blank"> </a><span class="mixed-citation"><a href="http://www.ncbi.nlm.nih.gov/pubmed/15581390" target="_blank">Cameron D, Gaito A, Harris N, et al. (2004) <span class="ref-title">Evidence-based guidelines for the management of Lyme disease</span>. <span class="ref-journal">Expert Rev Anti-Infect Ther</span> <span class="ref-vol">2</span><span class="ref-iss">1 Suppl</span>: S1–13.</a></span></div>
<div class="contribs">
<br /></div>
<div class="contribs">
<span class="mixed-citation">3. </span><span class="mixed-citation"><span class="mixed-citation">TickNET: A survey of testing practices for
Lyme disease by large commercial laboratories –United States, 2008.
Presented at the 13th International Conference on Lyme Borreliosis and
other Tick-Borne Diseases, Boston, MA, August 19, 2013. Available: <a href="http://www.poughkeepsiejournal.com/assets/pdf/BK211782914.pdf" target="pmc_ext">http://www.poughkeepsiejournal.com/assets/pdf/BK211782914.pdf</a>.</span></span></div>
<div class="contribs">
<br /></div>
<div class="contribs">
<span class="mixed-citation"><span class="mixed-citation">4. </span></span><span class="mixed-citation"><span class="mixed-citation"><span class="mixed-citation">Liegner K (2012) Valley views: Major
initiative needed to fight tick-borne infections. Poughkeepsie Journal,
August 21, 2012. Available: <a href="http://www.poughkeepsiejournal.com/article/20120822/OPINION04/308220005/Valley-Views-Major-initiative-needed-fight-tick-borne-infections" target="pmc_ext">http://www.poughkeepsiejournal.com/article/20120822/OPINION04/308220005/Valley-Views-Major-initiative-needed-fight-tick-borne-infections</a>.</span></span></span></div>
<div class="contribs">
<br /></div>
<div class="contribs">
<span class="mixed-citation"><span class="mixed-citation"><span class="mixed-citation">5.</span></span></span> <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/#__ffn_sectitle" target="_blank">Evaluation of in-vitro antibiotic susceptibility of different morphological forms of </a><i><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/#__ffn_sectitle" target="_blank">Borrelia burgdorferi</a>, </i><span class="citation-abbreviation">Infect Drug Resist. </span><span class="citation-publication-date">2011; </span><span class="citation-volume">4</span><span class="citation-issue"></span><span class="citation-flpages">: 97–113.</span><span class="fm-vol-iss-date">Published online 2011 May 3. </span><span class="doi"></span>Eva Sapi,<sup>1</sup> <sup>et al</sup><br />
<br />
<div style="text-align: center;">
<span style="color: red;"><b>Pin-able picture break! </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-Zrdte-aoEJ4/UvpznwSsZ8I/AAAAAAAACyc/Z6IJ9WL011g/s1600/lyme2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-Zrdte-aoEJ4/UvpznwSsZ8I/AAAAAAAACyc/Z6IJ9WL011g/s1600/lyme2.jpg" height="180" width="320" /></a></div>
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<br />
<sup><span style="font-size: small;">6. <a href="http://lymedisease.org/news/lyme_disease_views/lyme-sexual-transmission.html" target="_blank">Study Suggests Lyme Disease May Be Transmitted Sexually</a>, The Journal of Investigative Medicine 2014;62:280-281</span></sup><br />
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<sup><span style="font-size: small;">7. </span></sup><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520031/?report=classic" target="_blank">Issues in the Diagnosis and Treatment of Lyme Disease</a>, <span class="citation-abbreviation">Open Neurol J. </span><span class="citation-publication-date">2012; </span><span class="citation-volume">6</span><span class="citation-issue"></span><span class="citation-flpages">: 140–145. </span><br />
<br />
<span class="citation-flpages">8.</span><b> <a href="http://www.ncbi.nlm.nih.gov/pubmed/21196901" target="_blank">Lyme</a></b><a href="http://www.ncbi.nlm.nih.gov/pubmed/21196901" target="_blank"> disease diagnosis and treatment: lessons from the AIDS epidemic.</a> <span role="menubar"><a href="http://www.ncbi.nlm.nih.gov/pubmed/21196901#" role="menuitem" title="Minerva medica.">Minerva Med.</a></span> 2010 Dec;101(6):419-25.<br />
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9. <a href="http://www.ncbi.nlm.nih.gov/pubmed/21305487" target="_blank">Postural orthostatic tachycardia syndrome following <b>Lyme</b> disease. </a><span role="menubar"><a href="http://www.ncbi.nlm.nih.gov/pubmed/21305487#" role="menuitem" title="Cardiology journal.">Cardiol J.</a></span> 2011;18(1):63-6.<br />
<br />
10.<a href="http://www.ncbi.nlm.nih.gov/pubmed/12478332" target="_blank">Complex regional pain syndrome and <b>lyme</b> borreliosis: two different diseases? <span role="menubar"></span></a><a href="http://www.ncbi.nlm.nih.gov/pubmed/12478332#" role="menuitem" title="Infection.">Infection.</a> 2002<br />
Dec;30(6):396-9.<br />
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<div style="text-align: center;">
<b><span style="color: red;">Another random picture break! Take that Pinterest!</span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-EzEhm2KbUmA/UvqPaRuNX7I/AAAAAAAACys/DZuWW60T4K8/s1600/lyme3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-EzEhm2KbUmA/UvqPaRuNX7I/AAAAAAAACys/DZuWW60T4K8/s1600/lyme3.jpg" height="200" width="320" /></a></div>
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11. <a href="http://www.ncbi.nlm.nih.gov/pubmed/21902089" target="_blank">Severe orthostatic hypotension in a diabetic patient may not be due to diabetic <b>autonomic</b> neuropathy</a>. <span role="menubar"><a href="http://www.ncbi.nlm.nih.gov/pubmed/21902089#" role="menuitem" title="Clinical medicine (London, England).">Clin Med.</a></span> 2011 Jun;11(3):290-1. (LYME FOUND)<br />
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12. <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/" target="_blank">Review of evidence for immune evasion and persistent infection in Lyme disease</a>. <span class="citation-abbreviation">Int J Gen Med. </span><span class="citation-publication-date">2013; </span><span class="citation-volume">6</span><span class="citation-issue"></span><span class="citation-flpages">: 291–306.<span style="color: red;">**** Excellent</span></span><br />
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<span class="citation-flpages"><span style="color: red;"><span style="color: black;">13</span>. </span></span><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3743303/" target="_blank"><em>Borrelia burgdorferi</em> aggrecanase activity: more evidence for persistent infection in Lyme disease</a><span class="cit">, Front Cell Infect Microbiol. 2013; 3: 40. </span><br />
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<span class="cit">14.</span> <a href="http://cid.oxfordjournals.org/content/45/2/149.long" target="_blank">Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease, </a><span class="cit"></span>, <span role="menubar"><a href="http://www.ncbi.nlm.nih.gov/pubmed/17578772#" role="menuitem" title="Clinical infectious diseases : an official publication of the Infectious Diseases Society of America.">Clin Infect Dis.</a></span> 2007 Jul 15;45(2):149-57. Epub 2007 Jun 5<br />
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15. <a href="http://iai.asm.org/content/73/2/1014.abstract?ijkey=7bf49362b40f15b5d356e5c9a017af42f665a6ef&keytype2=tf_ipsecsha" target="_blank">Borrelia burgdorferi, Host-Derived Proteases, and the Blood-Brain Barrier <cite><abbr class="slug-jnl-abbrev" title="Infection and Immunity">Infect. Immun.</abbr><span class="slug-pub-date" itemprop="datePublished">
February 2005
</span>
<span class="slug-vol">
vol. 73
</span><span class="slug-issue">
no. 2
</span><span class="slug-pages">
1014-1022 </span></cite></a><br />
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<b><cite><span class="slug-pages">I think 15 is enough for now. I chose those because they are solid articles/links and also link out to even more sources if needed.</span></cite></b><br />
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<span style="font-size: small;"><cite><span class="slug-pages">Some other Lyme resources/thoughts in case you are tossing around the idea that your mystery POTS/chronic illness could be caused by Lyme, or may be worse because of Lyme:</span></cite></span><br />
<br />
<span style="font-size: small;"><cite><span class="slug-pages">1. In my not-so-humble and un-expert opinion, if you have been bitten by a tick or had a mystery rash without a tick (but please remember,only an estimated 30-50% of Lyme folks ever had a rash, you CAN STILL HAVE LYME WITH NO BULLS EYE RASH), and have any kind of chronic illness, get tested just to rule it </span></cite><cite><span class="slug-pages">out. This is a no brainer to me! Especially since it is treatable. I DON NOT think everyone has Lyme. I have, however, read the science behind it now, and am no expert, but this is a big DUH to me if you have no clear etiology to your illness. The testing is not expensive and it's one more thing to cross off the list.</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages"></span></cite></span><br />
<br />
<cite><span class="slug-pages">By the way - I have no clue why blogger
will not let me un-italicize my writing at this point. I officially give
up - the rest of this post will be in italics. </span></cite><br />
<br />
<span style="font-size: small;"><cite><span class="slug-pages">The list of diseases and conditions cause by Lyme is huge, and here is a snippet based on published journal articles/reviews:</span></cite></span><br />
<br />
<span style="font-size: small;"><cite><span class="slug-pages">-MS (recent Mayo estimates are 30-% of all MS patients have Lyme, there is an interesting ongoing study of spinal fluid of MS patients currently)</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-POTS</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Fibro</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-CFS/ME</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Lupus and almost all autoimmune conditions, since auto-antiboodies can be produced as a result of Lyme, mimicking many things </span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-other secondary dysautonomias </span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Arthritis</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Autism</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-ADHD</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-PANDAS</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Alzheimers </span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Mitochondrial Disease</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Mast Cell Diseases</span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-Endocrine diseases (Additions, Cushings, etc..) </span></cite></span><br />
<span style="font-size: small;"><cite><span class="slug-pages">-the list goes on.........! Lyme is called "the great imitator" for good reason.</span></cite></span><br />
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<span style="color: red;"><span style="font-size: small;"><cite><span class="slug-pages">Pinnable random picture: Unicorn rainbow IV fluids (thanks Dedee!):</span></cite></span></span><br />
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<a href="http://4.bp.blogspot.com/-Gjh6R_I3gq4/U4YZRr_eA1I/AAAAAAAAC9Q/6YxJB7_Hm0c/s1600/2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-Gjh6R_I3gq4/U4YZRr_eA1I/AAAAAAAAC9Q/6YxJB7_Hm0c/s1600/2.jpg" height="294" width="320" /></a></div>
<cite><span class="slug-pages"><br /></span></cite>
<br />
<cite><span class="slug-pages">2. Where to get tested:</span></cite><br />
<cite><span class="slug-pages"><br /></span></cite>
<cite><span class="slug-pages">~Igenex is said to have the best Western Blot, in terms of sensitivity. They are licenced and accredited and have all the other legit qualifications, even in the tough states such as NY and CA: <a href="http://www.igenex.com/Website/">http://www.igenex.com/Website/</a></span></cite><br />
<cite><span class="slug-pages">~I have been told Stoney Brook has a good Western Blot as well, and is better received by skeptical doctors: <a href="http://medicine.stonybrookmedicine.edu/pathology/tick">http://medicine.stonybrookmedicine.edu/pathology/tick</a></span></cite><br />
<cite><span class="slug-pages">~You can now get an actual culture done through Advanced Laboratories, though met with resistance from the CDC, even though the possible contamination issues have been debunked by scientists (I'll provide more info on that later): <a href="http://www.advanced-lab.com/">http://www.advanced-lab.com/</a></span></cite><br />
<br />
<cite><span class="slug-pages"><br /></span></cite>
<cite><span class="slug-pages"><b>Part 2 of this will have snarky commentary and a review of these articles and an explanation in my unqualified terms about the current state of Lyme/Co-Infections. </b></span></cite><br />
<br />
<cite><span class="slug-pages"><b>Happy reading/Pinning! </b></span></cite><br />
<cite><span class="slug-pages"><b>-Claire </b> </span></cite><br />
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Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com1tag:blogger.com,1999:blog-7709891692454052883.post-12055633949621902032014-01-19T16:18:00.000-05:002014-01-19T16:28:51.454-05:00Found My POTS Cause. Probably. But Finally.<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">This is going to be a long one, just warning you. It only took 11 years, but we have finally found what is most likely causing my POTS. </span>*highkick!*<br />
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I have not written on here in a LOOOOONG time. Like really written. I just haven't had it in me. Most of you that have read through this blog know that my goal was to make sense of this POTS and dysautonomia junk, and encourage folks to find their cause - because 90% of POTS is secondary, and frankly, most doctors just brush it off as no big deal. There are only band-aide medications, you can't really get well unless the cause is found if you happen to fairly debilitated by it. And even then there is no guarantee - but SOMETHING is causing your POTS, and if it's someting serious, YOU NEED TO KNOW.<br />
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What's ironic about this timing is that after having a port removed the day before Thanksgiving <br />
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because it had gone horribly, terribly wrong (clots, nerve damage, clogged, blah blah blah, etc...), I decided to take a break. I rescheduled all my appointments well into 2014 to take a few months off, because I AM TIRED OF THIS CRAP. 2012 and 2013 were spent on a wild goose chase after an admission where the inpatient physical therapy program actually discharged me, citing that I obviously had an underlying medical condition that needed addressed, and they were alarmed at my blood work. <br />
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So I have been crocheting, making jewelry and fairy garden miniatures (that's right!), and keeping my type-A mind
occupied with other things like founding an organization to collect crochet/knit warm
things for the homeless. I left all Facebook and other support groups, which has been wonderful. I'm in a few small ones with people I know, but my online experience is now filled with good friends, no drama, and a core group of lovely folks I can chat with when needed (Unicorn Rainbow Hobbit Sausage Power! You know who you are).<br />
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<span style="font-size: large;"><b>My three <a href="https://www.etsy.com/shop/HorizontalDesigns" target="_blank">Etsy shops</a> (shameless self promotion!):</b></span><br />
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Anyway - I went to all the appointments, made the
rounds, and have been pushing through, never really feeling "chronically sick" in my
head. I have healthy dreams. I am surfing, and snowboarding, and going
to music festivals, and battling aliens (a lot!), and taking my kids out to do "normal" things. I stand up too fast constantly because in my mind I am
still not sick. I accept and try to make the most of my situation, but have always felt in my gut that I will wake up well one day. It may not be true, but for whatever reason, it's in my head and I'm keeping it there. <br />
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I have been exhausted from all the sick stuff, and decided a long time ago I needed to <u>not </u>focus on or write about my health to maintain my sanity. I live with being very sick every day, and at this point it's been going on for so long, I'm just plain over it. I don't have "well days" any more, and haven't for a long time. I get a few "well hours" here and there, and then crash. It's now been 11 years of POTS and other "typical" chronic stuff in varying, but functional degrees, and the last 3 years of "sick as hell and homebound" - where I have spent over a year in the hospital, with nine months of that continuous.<br />
<br />
So, here's a brief rundown: I am now in a power wheel chair because I can not push myself for more than 20-50 feet, my neuropathy has progressed alarmingly and dramatically with no explanation, and that crap hurts (or is numb!), my orthostatic issues have just gotten worse, and I have developed a bunch of new *mystery* neuro issues that landed me in the ER many times, including losing my vision, loss of use of various limbs, crazy pain and spasming issues, and with no answers after lots of testing and blank stares. My neutrophils and WBC count remain chronically high, I continue to battle blood clotting, found out I have a tiny aneurism in my carotid right behind MY FACE (but it's no big deal apparently), along with many wacky blood tests that come back for "non-specific inflammation or acute infection". LOTS of those results. All of them actually. Elevated C4, elevated sed rate, high IgE, wacky ALT and ALP, and many more things of that nature. My blood work shows that I have been battling something, just no one can figure out what. I continue to develop new food allergies - but they are not "true" allergies, and my GI symptoms are the worst they have been ever. My skin is seriously pissed off - I get rashes from the sun, flush constantly, have mystery hives and horrible dermatographism. I could keep going on, but you get the point. The list is long, but "non specific". Not sharing this as a woe-is-me pity party, because I don't want anyone's pity, but to give you context and in case anyone relates. The only nice thing, is there has been enough measurable weird stuff in my blood work that no one questions my sickness anymore, or implies it's anxiety. But that takes almost dying and deteriorating to this point. Nice!<br />
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I have had no answers from doctors, which I would have been ok with if I wasn't getting worse. If I was the way I was 3 years ago, and able to push through and function most days, I'd still be ignoring all but the emergent things (like blood clots and bad falls/faints). But I'm not. And the fact that there has been little to no urgency in helping me get better and doing whatever it damn well takes to find out what my body is obviously battling has left me feeling like the medical community as a whole is broken, and has failed me and my family time after time. I have had one or two doctors really make a truly valiant effort - but they hit a wall at a certain point, and have stopped trying and are just managing symptoms. All I hear from the over 20 specialists I now have locally, and at two other well regarded university hospital systems is, "something is wrong, but we don't know what and you need to go somewhere like the Mayo Clinic". Guess what? The Mayo Clinic is 14 hours away and I can't make an outpatient trip, and their neuro department recently rejected an outpatient appointment request anyways. I was told by their Internal Med people that I was "too sick for outpatient" and would need to be inpatient transferred. So my doctor tried the last time I was admitted in November during the port fiasco, but Mayo had no beds available, and won't take me as a direct admit because they are so full. <br />
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<span style="font-size: large;"><b>Well - screw that! </b></span><br />
<a href="http://4.bp.blogspot.com/-nHEKCx_eHMk/Utw8M1yd25I/AAAAAAAACtk/zDKk8rL_e9A/s1600/4.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-nHEKCx_eHMk/Utw8M1yd25I/AAAAAAAACtk/zDKk8rL_e9A/s1600/4.gif" /></a>This is <i>my health</i>, <i>my life </i>that is passing by, <i>my kids</i> that don't get to have their Mommy outside the house with them, and even inside the house much of my time is spent recovering from a short burst of activity. My parents and husband basically devote most, if not all, of their energy to caring for me and my kids because I can't. AND THAT IS NOT OK. That is urgent, dammit, and if the doctors don't care enough, then I have to. Taking breaks is good - I highly recommend it to anyone that is burnt out, but then you have to get back on horse and keep searching. Again - the irony is that I did this final test on whim, while on a medical break, and it may well have changed everything!<br />
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<b>So here are the things I have been tested for and had ruled out, for those of you on this same quest to compare to (with links to conditions):</b><br />
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-No Primary Dysautonomias. Autonomic testing (QSART) shows I now have little to no sweat function in parts of my feet/calves/arms, and my last TTT was significantly worse than in 2012. I have patchy <a href="http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html" target="_blank">SFN</a> all over my body.<br />
-Autoimmune diseases ruled out, even though all the rheumy's I've seen say my body is inflamed, they just don't know what it causing it. I have had <a href="http://www.raynauds.org/" target="_blank">Raynaud's </a>since I was a teen, and <a href="http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454" target="_blank">costochondritis </a>(painful rib inflammation) since my early 20's, but that's it. My ANA's were slightly positive, but then negative again. And my <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003354.htm" target="_blank">C4 </a>is high.<br />
-<a href="http://www.ncbi.nlm.nih.gov/pubmed/23179866" target="_blank">MCAD</a> testing came back negative, but again - some kind of inflammation or infection showed up, just not MCAD. We did the chilled testing panel recommended by Dr. Afrin. Only elevated IgE and C4. And WBCs, and ALP/ALT. The usual. But my allergies are crazy right now, so that is an ongoing mystery. I'm getting a full GI work up when I feel up to it and being tested for suspected <a href="http://en.wikipedia.org/wiki/Eosinophilic_gastroenteritis" target="_blank">eosinophilic gastroenteritis</a>, which would explain a lot actually. Was told I have <a href="http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/" target="_blank">gastroparesis</a> (duh), but it's mild/moderate and fluctuates. <br />
-Cancers & blood diseases, as my neutrophils were alarming to everyone and I had to get a full work up with my hematologist, who told me it was secondary to an infectious or autoimmune process, and to go see other specialists, which I did<br />
-Had a Labcorp Western Blot come back completely negative for Lyme, EBV(mono) come back for past infection and possible chronic (for doctors that believe in that), and the infectious doctor ordered some pretty fancy testing to see if these WBC's were hiding in a mystery cyst or internal injury somewhere, and the test came back normal. The basic infectious culture/labs came back normal.<br />
-Went to see a wonderful geneticist group at UVA, and they did a panel for random unexplained fevers (which I get, along with a sore throat and swollen glands after activity), and it came back negative except for a single mutation for <a href="http://en.wikipedia.org/wiki/PAPA_syndrome" target="_blank">PAPA syndrome</a>, which I don't have. But it's a gene associated with inflammation, but not obviously causal of anything. They told me the same thing - you have something inflammatory or infectious and need to see a clinician. They were very nice though.<br />
-No <a href="http://www.arthritis.org/conditions-treatments/disease-center/ehlers-danlos-syndrome-eds/" target="_blank">EDS</a>. Not even an issue to be tested for, I am completely un-bendy and have zero hallmarks of it, confirmed by geneticist. <br />
-Was told my blood work and clinical stuff doesn't present for <a href="http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934627" target="_blank">Mitochondrial disease</a> by the geneticists as well.<br />
-Had multiple MRI's over the past few years and no MS or central nervous system diseases, but have symptoms of them. My last C-spine looked good, except for possible increased spinal fluid, but my neuro was not concerned and said it looked like a lot, but not alarmingly so. <br />
-I either have <a href="http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm" target="_blank">RSD/CRPS</a> or possibly <a href="http://emedicine.medscape.com/article/200071-overview" target="_blank">Erythromelalgia</a> <span style="color: black;">in my right arm and both hands after the port fiasco. That sucks.</span><br />
-No <a href="http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm" target="_blank">Chiari</a> or associated malformations.<br />
-NOTHING. NOTHING. and more NOTHING. "Unspecified inflammation and signs of acute infection". That's it. I know I'm forgetting some of the tests, I have had so many, but that's the gist of it.<br />
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<span style="font-size: large;"><b>THEN.....dun dun dun.....</b></span><br />
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Even after a meeting with the infectious disease doc at a well regarded university hospital, my Mom kept reminding my of a few things:<br />
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1. My blood work shows major, long term signs of infection and inflammation.<br />
2. I worked professionally in tropical waters as a scuba diver and researcher while in grad school in the Keys, and was in numerous tanks with rescued dolphins, along with dissecting them (called a necropsy).<br />
3. I had my firs tick bite at 12, and she personally pulled that sucker off my neck. This is in Northern Virginia, which is completely infested with Lyme disease. Funny enough, I came down with Mono not much later, and had no known exposure to it (I had not been kissing anyone or sharing drinks thank you very much).<br />
4. I have been bitten numerous other times by ticks all over VA while playing sports and camping into my early 20's, when I moved here to VA Beach in 2000. <br />
5. While in the Keys, I had some kind of mystery rash/infection from the water that landed me in the ER, and had my first POTS episode a few months later while back in the Keys.<br />
6. She watched "Monsters Inside Me" on Animal Planet and was convinced I had some kind of parasite or infection. I kept saying, "no, no - I was tested, I saw an ID specialist" blah blah blah.<br />
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Well, I gave in and got the <a href="http://www.igenex.com/Website/" target="_blank">Igenex</a> Lyme and Co-infection test just for the hell of it, to definitively put it to rest. I did a lot of reading. I knew there had been some controversy with the testing giving false positives, but learned that the articles by the New York times was retracted. I'm highly skeptical (not going to sugar coat it) of a lot of the treatments for Lyme I have read about and it all seemed a bit wacky to me.<br />
<br />
Turns out they are a licensed, certified testing facility. Even in California and New York, the toughest states to be certified in. The test was actually cheaper out of pocket than most of the blood work I've had done over the last few years, and is partly covered by my insurance. So I took it. And guess what?<br />
<br />
<b><i>I have not just Lyme, but Bartonella henselae as well.</i></b><br />
<br />
<span style="color: purple;"><span style="font-size: large;"><b>Why this is good, bad, and seriously interesting: </b></span></span> <br />
<br />
1. Bad: INSANE politics and controversy about Lyme disease, denial of the existence of "chronic" Lyme by the CDC and the panel of Infectious Disease docs that created the guidelines that the CDC follows. That panel is under investigation. On that panel, 9 out of 12 doctors had a financial stake in Lyme "patents" (you can patent organisms and DNA now, who'd have guessed) and vaccinations/treatments/etc... <i>That is illegal</i>. By law, panels of doctors cant have any vested interest in creating guidelines or financial ties that will affect the outcome. The CDC made an exception. Turns out they do this with many vaccinations as well. I suggest watching the award winning documentary <a href="http://topdocumentaryfilms.com/under-our-skin/" target="_blank">"Under Our Skin"</a> for a good overview of the political climate of Lyme.<br />
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2. Bad: Where to get credible info. Where to get credible testing. Where to get treatment!? Lyme doctors are hunted down by the CDC and state medical boards, so many are secretive and do not take insurance. Most infectious disease doctor deny the existence of chronic Lyme, but that is changing, because people are speaking up, finding treatment, and getting better with it. BUT - there are doctors out there that prey on desperate, chronically ill patients, which is true in any mystery illness world. BUT(again) - now there are also protected stated where doctors can treat Lyme without fear if they follow the State's guidelines.<br />
<br />
3. Bad: There are no doctors within 4 hours of me that treat Lyme or will even talk to me about it. There is so much conflicting info out there! But I know people (multiple, many many people) who have treated their Lyme and gotten better. At this point, no one has any other suggestions, and after the hundreds of appointments and tests, and the thousands (more) of dollars it's cost, it's time to move forward with something, for me at least. If a doctor doesn't want to hear about, fine. They don't have to. I'm pretty much over the medical profession right now.<br />
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4. Bad: With Lyme and other infection treatment, many people get very sick once they start treatment before seeing improvements. This can last from weeks to months to years - it all depends on how sick you are, how infected you are, and everyone is just different and responds differently. This is the part that scares me. When you start trying to kill Lyme it releases toxins into your system, and can damage organs and cause seizures, and all kinds of stuff. Trying not to think about it. Bartonella does not cause <a href="http://en.wikipedia.org/wiki/Jarisch-Herxheimer_reaction" target="_blank">Herx reactions </a>thankfully, but Lyme does. <br />
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4. Good: <b>I have a diagnosis!</b> <i>And there is the potential to get better.</i> Like I mentioned, I know many people who treat their Lyme/Co-Infections and are better overall, and become functional again. It's kind of surreal. All the things that were in the running as causes of this before were life long, chronic debilitating conditions. And I have been sick for so long, I may have a few of those anyways. But the hope of seeing some improvement has me a bit numb and overwhelmed with hope at the same time.<br />
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5. <b>Interesting</b>: here is where I'm going to get geeky scientific on how this makes sense for my clinical presentation, history, and symptoms. I have been reading in depth about Bartonella henselae, on a cellular level involving the cytokine cascades and other farily amazing mechanisms of this organism. I'm just going to state what I've learned from my reading of medical journal articles and a very technical book by a well regarded doctor written for clinicians. Feel free to draw conclusions how ever you want, but for me, these pieces of info had major relevance in relationship to my POTS/OI, chronically high WBC, and many other symptoms.<br />
<ul>
<li>Bartonella infect endothelial cells - those are the cells lining the blood vessels. They actually stimulate the production of new endothelial cells, causing inflammation of the lining of the blood vessels. This lining controls what gets in and out of the vessels, as well as vasoconstriction and vasodilation. Hmmmmm.......</li>
</ul>
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<ul>
<li>Bartonella also hide in these pockets inside the cells called vacuoles.They hide from and adapt to your immune system (tricky bastards). They also release - simultaneously - a new bacteria load into the blood stream to infect any new endothelial cells and be available in the blood stream for critters that may come along and bite you/a mammal - thus continuing the bacterium's life cycle - EVERY 5 DAYS. Wowza. </li>
<li>It's estimated that up to 25% of all mammalian populations carry Bartonella. With humans, it only presents symptoms and causes issues in the immune compromised - like a person with HIV/AIDS, or with other infections such as Lyme, or any immune compromising health condition. </li>
<li>The two most affected mammal groups are deer and cetaceans (dolphins and whales). Guess who lived in tick infested deer land from 1985-2000? ME. And guess who was in tanks with dolphins multiple times for extended periods of time? ME. They are transmitted by all kinds of fleas, lice, ticks, etc...including water born species. ME. Scuba diving. A whole lot.</li>
<li>Bartonella can cause cardiac, neurologic, liver, and all kinds of other issues/damage/symptoms.</li>
<li>Bartonella is thought to be in 5-7% of the blood bank blood in the USA. This is especially troubling because the people receiving blood transfusions are sick, and susceptible to becoming sick from Bartonella. (random, but I found it troubling)</li>
</ul>
So that's my Bartonella break down just from the little bit of reading I have done. I haven't delved into Lyme in depth beyond the basics yet. I'm still a bit in shock and paralyzed by the whole thing. I start treatment next week - going very slow as to hopefully minimize any herxing issues. Learning the mechanics of what are going on in my body helps to take the fear away. So I'm getting back to my lab roots, I worked staring at cells in microscopes for years, so I find this all very fascinating. <br />
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<br />
I hope this is helpful to someone! I'm meeting more and more people that are getting diagnosed, treated properly, and getting better with Lyme/Co-infections. They are getting their life back. If you have been bitten by anything and have POTS, please consider checking out the<a href="http://www.igenex.com/Website/" target="_blank"> Igenex website</a> and getting tested. Read up on the false negative/positive rates of other tests, and even the Igenex test. It was signed into law in my state of Virginia that doctors are required to inform patient that Lyme testing basically sucks. Which is crazy, as the fed only gives $25 million a year to Lyme research, when last year the CDC changed it's tune from 30,000 NEW people being infected to 300,000 NEW INFECTIONS. A YEAR. And rates are rising. That's a pretty big jump! I'm sure the promise of a money making vaccination on the horizon had <i>nothing</i> to do with it.<br />
<br />
Anyway - here's info on the new law in VA:<br />
<br />
"The bill Hugo helped sponsor will require any doctor’s office that
orders a Lyme disease test to also inform that patient that the Centers
for Disease Control and Prevention calls Lyme disease the sixth-fastest
growing disease in the U.S. <br />
The doctor or his office staff must
also tell the patient that current lab testing for Lyme “can be
problematic and standard laboratory tests often result in false negative
and false positive results, and if done too early, you may not have
produced enough antibodies to be considered positive.”<br />
The doctor
must advise patients that if they continue to have symptoms, they should
check into re-testing or other treatment options." <a href="http://news.fredericksburg.com/newsdesk/2013/04/06/law-targets-lyme-disease/" target="_blank">-Law Targets Lyme Disease</a><br />
<br />
I was not told this. In fact, my ID doc told me people that went out and got tested and thought they had chronic Lyme were wacky and that it didn't exist. I sent him my results last week. We'll see what he says. I could keep writing, it's a huge complicated subject, but for now I'll get back to my yarn and jewelry making addictions :)<br />
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May the force be with you.<br />
--Claire<br />
*highkick*<br />
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<br />Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com7tag:blogger.com,1999:blog-7709891692454052883.post-29246157610597823752013-09-30T14:29:00.002-04:002013-09-30T14:29:43.556-04:00Dysautonomia Awareness Month 2013In case you hadn't heard - it's unofficially Dysautonomia Awareness Month in October - which is this week! Here are a few links and graphics from <a href="http://www.dysautonomiasos.com/" target="_blank">Dysautonomia SOS</a> you can share to spread the word:<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-zvI-9Fb6EaQ/UknCqgdAq_I/AAAAAAAACSY/WZOcf8-ZcXk/s1600/cb28af5c0c1011e2a65622000a1e9e39_7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-zvI-9Fb6EaQ/UknCqgdAq_I/AAAAAAAACSY/WZOcf8-ZcXk/s320/cb28af5c0c1011e2a65622000a1e9e39_7.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sized for Facebook and Instagram.</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-33czesJ0BCo/UknBwFjZSwI/AAAAAAAACRg/GIKN3f49YRk/s1600/DAMonth2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-33czesJ0BCo/UknBwFjZSwI/AAAAAAAACRg/GIKN3f49YRk/s320/DAMonth2013.jpg" width="313" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">General flier.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-WWLbXDmljg4/UknBww5wJDI/AAAAAAAACRo/gU0jBVlwDBo/s1600/DySOSAR.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-WWLbXDmljg4/UknBww5wJDI/AAAAAAAACRo/gU0jBVlwDBo/s320/DySOSAR.png" width="309" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sized to be a profile pic on Facebook.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-zMmSH95yt_4/UknByYgCtgI/AAAAAAAACRw/s8p9gQL2KOc/s1600/ILUV+POTSyJPEG.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://1.bp.blogspot.com/-zMmSH95yt_4/UknByYgCtgI/AAAAAAAACRw/s8p9gQL2KOc/s320/ILUV+POTSyJPEG.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love all my POTSies :)</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-VBapNwPDGjU/UknB0AgvLhI/AAAAAAAACR4/6-Z0rpbHRig/s1600/JPEGInfo.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-VBapNwPDGjU/UknB0AgvLhI/AAAAAAAACR4/6-Z0rpbHRig/s320/JPEGInfo.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Humor is the best weapon sometimes! </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-0QygDIRHKu8/UknB3txYhKI/AAAAAAAACSA/kqSJpDbybJI/s1600/DysDivaJPEG.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://2.bp.blogspot.com/-0QygDIRHKu8/UknB3txYhKI/AAAAAAAACSA/kqSJpDbybJI/s320/DysDivaJPEG.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See? Humor. Win. </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-yLmBfjZbOhQ/UknB8PEEawI/AAAAAAAACSI/-WGKsuAooH4/s1600/FacebookHeader.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="118" src="http://2.bp.blogspot.com/-yLmBfjZbOhQ/UknB8PEEawI/AAAAAAAACSI/-WGKsuAooH4/s320/FacebookHeader.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is sized to be a Facebook header.</td></tr>
</tbody></table>
Happy October!!!! Let's spread the word homies! <br />
---ClaireAnonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-86423907999329168162013-09-11T19:13:00.001-04:002013-09-11T19:14:04.497-04:00POST REWIND: Choose to be VISIBLE<b>
</b><b>
</b><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-UdnU2sVXMyI/UjD4cGxHutI/AAAAAAAACM0/0ipsRALmqhU/s1600/IMG_7524.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://3.bp.blogspot.com/-UdnU2sVXMyI/UjD4cGxHutI/AAAAAAAACM0/0ipsRALmqhU/s200/IMG_7524.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First trip out in the new power chair. </td></tr>
</tbody></table>
<div class="post-title entry-title" itemprop="name">
<b>
I wrote this a little over a year ago and nothing has changed in my opinion of ditching the term "invisible illness". When I see your pictures - I see you are ill. If you are trying to "pretend" to look normal, you can't expect anyone to know you are sick, and that is fine. BUT- it's time to put the shame aside, start talking more, and educate people about what's wrong. Ditch the stigma. It starts with us. If we cling to this term, it continues to keep those illnesses invisible. And if you need to hide your illness (for work, kids, etc...) don't expect people will magically know you are sick. You can read more about my thoughts on this below.</b></div>
<h3 class="post-title entry-title" itemprop="name">
<a name='more'></a></h3>
<i><span style="font-weight: normal;">As a side note - I haven't posted in a LONG time, frankly because I'm sick of talking about being sick. And sick of being sick. I'm two years+ out from being in the hospital for 9 months with my daughter's pregnancy/birth, and no one has been able to figure out why I am still so sick, and actually getting worse. It's been over a decade of various POTS/dysautonomia and autoimmune type stuff, and I at the "just keep swimming" stage. I have deliberately withdrawn to help cope, and I'm sorry I can't answer your emails through this blog anymore. I am now in an electric wheelchair I can barely use, as my symptoms have progressed and my activity tolerance levels are pathetic. I have chosen to leave all the health related groups online, and focus my time and limited spoons on my family, my crafty hobbies that make me happy, and the business I do from home designing crochet and jewelry. The only health related stuff I spend time on is working with Dysautonomia SOS projects. I have a wonderful support group in place, and need to take some time for me. I hope to re-engage and write more once somebody figures this junk out, and I'm no longer home-bound. </span></i><br />
<h3 class="post-title entry-title" itemprop="name">
Anyways..... here you go!</h3>
<h3 class="post-title entry-title" itemprop="name">
<span style="font-size: x-large;">Choose to be Chronically VISIBLE</span></h3>
<h3 class="post-title entry-title" itemprop="name">
<span style="font-size: x-large;">8/4/12</span></h3>
<div class="post-header">
</div>
Alrighty. Time for an Op-ed. It may tick some people off. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-31Uj_IBoiJY/UB3UUKfZVnI/AAAAAAAAA3Y/0QsUInctS2k/s1600/images2.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-31Uj_IBoiJY/UB3UUKfZVnI/AAAAAAAAA3Y/0QsUInctS2k/s1600/images2.jpg" /></a></div>
I see much posting going on regarding <i>INVISIBLE ILLNESS</i> and
spreading awareness by promoting the idea of an illness being
invisible. This term has always bothered me, as I have mentioned before
on this blog. It has the ring of victim/helplessness to me, and I tend
to like things that are assertive, proponents for <span class="IL_AD" id="IL_AD7">change</span>, and action oriented.<br />
<br />
<br />
<i><b><span style="font-size: medium;">I think the problem here is two fold:</span></b></i><br />
1. There is no invisible illness, JUST IGNORANCE. What illness is
truly visible? There are very few compared to vast majority of
illnesses, diseases, and <span class="IL_AD" id="IL_AD5">conditions</span>
that people suffer in silence and try to hide - or that do not cause
them to look deformed or like the traditional notion of "ill." And that
traditional notion of illness is what needs to change. By continuing to
use the term invisible illness, we are separating ourselves from other
people that "look sick," and in my opinion, making the problem worse. <br />
<br />
2. People find their identity in the "invisible illness" movement, and
use it as something to hide behind. NOT EVERYONE. I know that is
probably not most people's conscious intention. Many are looking to
find a way to spread awareness, which I commend. But is this how any of
us want to be known? As invisible? Is this the best way to spread
awareness? <br />
<br />
What society sees are deformities and stereotypes. Not illness. They
see something out of the ordinary and recognize something is "not right"
with that person. This actually has nothing to do with if they are
"ill" in some cases. Is an amputee ill? Maybe. Or maybe they are
missing a leg, but otherwise are perfectly healthy, and do triathlons.
This is a problem with society, not with those of us who are chronically
ill, and we need to address those stereotypes if anything is going to change. We need to speak about our conditions by NAMING THEM, and being <span style="font-size: medium;"><b>visible</b></span>, not promoting an image that quite frankly can be a bit whiny sounding at times.<br />
When I go to the <span class="IL_AD" id="IL_AD6">doctor</span> - which by the way is the only time I get to leave the <span class="IL_AD" id="IL_AD1">house</span>
because my health is not the greatest right now - I am on a stretcher.
I am strapped into a freaking stretcher, accompanied by paramedics.
That's how I roll. And I STILL get questioning looks, people staring. I
can see it in their expressions - what is wrong with her? The <span class="IL_AD" id="IL_AD11">medical</span>
professionals all exclaim that I look great, I am waaaaay to perky to
be sick, and they ask what is wrong. THEN I SCHOOL THEM. Literally.
And in a good way.<br />
<br />
I love it when people ask me what is wrong, or tell me I look great. I
do look great dammit - considering what I have been through, so that is
not an insult at all. And it gives me a chance to explain and educate
them in simple terms that I am indeed very sick, my nervous <span class="IL_AD" id="IL_AD4">system</span> is broken, and I pass out when I am upright very quickly. It causes me to feel like I have run a <span class="IL_AD" id="IL_AD3">marathon</span>
by the simple act of rolling over, or just sitting up. No more detail
is needed, unless I am looking for some sympathy. On some days I need
some sympathy - no shame in that - and will launch into more detail
about how I constantly feel like I have the flu, my heart pounds, I have
to lay flat for hours, showering puts me down for days, etc.... They
then say, "Oh! That sounds terrible, I never would have known!" And I
smile and hope that they have learned something about Dysautonomia and
maybe will now Google it, because the young (younger-ish -sorta kind of
young, humor me here) chick on the stretcher was in the office today,
and she has Dysautonomia.<br />
<br />
My point is - I AM ON A FREAKING STRETCHER! And I still don't look
"sick enough" for most people to recognize that something is wrong. And
they are curious, mostly kind, and just want to know. And they want to
know why I still smile and joke, and am generally a silly goofy
person. I ask them point blank - what is the alternative? Should I be
depressed? This is where I am at, I have my sad days, but I am grateful
for what I have most of the time and am trying to make the most of it.<br />
<br />
So - what is so wrong with someone asking why? I actually do the same
thing. I see a younger, or older, pretty or handsome person and assume
they are healthy. If they have rosy cheeks, look fairly "well" and are
standing upright, why would I think they are ill? How else would I
know? How else would you know? Because that is what society has taught
us. That beauty, symmetry, no deformities, and young-ish-ness equal
health. Only really really old people, people that look like they are
obviously dying (including children), and people with obvious physical
deformities are "sick looking" from the outside. <br />
<br />
So how to we address those stereotypes? How do we, the chronically ill, that suffer in silence many times, become visible?<br />
<br />
<span style="font-size: medium;">We educate, share, and make people aware
of what is wrong with our health. We talk openly about what our
illness looks like. And we do it in a way that non-sick people can
understand.</span><br />
<br />
<b>We NAME OUR ILLNESS. We choose to VISIBLE. </b><br />
<br />
We come up with ways to notify people that something is wrong with us,
if we want them to know (not everyone is comfortable with the world
knowing what is wrong with them, and that is perfectly fine! Just don't
complain that no one knows you are sick or understands if you are
trying to hide it - people are not in general psychic!). This is why I
like the <a href="http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf" target="_blank">spoon theory </a>-
it is an easy to understand, relate-able way to explain the lack of
energy with chronic illness to those who don't have a chronic illness.
There are tools like that out there for just about every chronic illness
situation. <br />
<br />
<i><span style="font-size: medium;"><b>Stereotypes</b></span></i><br />
For instance, lets check out some random pictures I pulled off the web.
I have no idea what is wrong with these people, they came from <span class="IL_AD" id="IL_AD10">Google images</span>, after I typed in "sick people":<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-et0CRVaB5eg/UBr58hDZpyI/AAAAAAAAA1k/VAWRUKzzeIE/s1600/cancer.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="209" src="http://4.bp.blogspot.com/-et0CRVaB5eg/UBr58hDZpyI/AAAAAAAAA1k/VAWRUKzzeIE/s320/cancer.jpg" width="320" /></a></div>
This poor woman looks very sick. Actually she looks likes she is dying,
which she may be. Based on her lack of hair, we assume she has <span class="IL_AD" id="IL_AD9">cancer</span>,
or maybe brain surgery, but don't know. But we know she is sick. I
hope she is ok, which is a lame thing to write, but I really do. I have
heard people compare POTS to cancer, or say they wish they had cancer because then they would have treatment options, and I DO NOT. I am thankful every day that I will live, and that I don't have cancer.
Do you really want this? Do you want your illness to be killing you
to the point that it is this obvious? Some of us have life threatening <span class="IL_AD" id="IL_AD12">progressive</span> diseases, and someday may unfortunately end up like this, but should enjoy every minute we are not and be thankful for it. <br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-zbpVGtd6foM/UB2yzOonVJI/AAAAAAAAA2A/1sXwe2LfZ-8/s1600/amputee.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://3.bp.blogspot.com/-zbpVGtd6foM/UB2yzOonVJI/AAAAAAAAA2A/1sXwe2LfZ-8/s200/amputee.jpg" width="200" /></a></div>
<br />
<br />
This pretty lady is missing an arm. She may have other stuff wrong with
her, I don't know. But if you saw her, you know that she has "earned"
her handicap <span class="IL_AD" id="IL_AD2">parking</span> spot, and something obviously happened to her. But is she sick? On a daily basis? In pain? We have no clue. <br />
<br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-LU0b3hju9Dg/UB2zZFerviI/AAAAAAAAA2I/RPRoT-QE_2Y/s1600/dialysis.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://2.bp.blogspot.com/-LU0b3hju9Dg/UB2zZFerviI/AAAAAAAAA2I/RPRoT-QE_2Y/s200/dialysis.jpg" width="200" /></a></div>
<br />
<br />
This man is hooked up to a dialysis machine. That means his kidney's
are failing, and he may be dying. This picture struck me, because if I
saw him rockin his mullet out and about at the grocery store, I'd have
no clue that he spent part of his days fighting for his life. Did he
get a transplant and is ok now? I hope so.<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-UXrWGbwasys/UB20CrF5MDI/AAAAAAAAA2Y/tTM-yh4pAyA/s1600/SH.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-UXrWGbwasys/UB20CrF5MDI/AAAAAAAAA2Y/tTM-yh4pAyA/s1600/SH.jpg" /></a></div>
<br />
We hopefully all know who this is. In case you did not know, this is <a href="http://en.wikipedia.org/wiki/Stephen_Hawking" target="_blank">Stephen Hawking</a>, the famous physicist, who continues to work through a motor neurone disease related to <a href="http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis" title="Amyotrophic lateral sclerosis">amyotrophic lateral sclerosis</a>, a <span class="IL_AD" id="IL_AD8">condition</span>
that has progressed over the years. He is now almost completely
paralyzed and communicates through a speech generating device. He is
obviously very ill.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-UxH6tC3OReY/UB25FPXL8tI/AAAAAAAAA24/lZSXWK1p82g/s1600/images.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-UxH6tC3OReY/UB25FPXL8tI/AAAAAAAAA24/lZSXWK1p82g/s1600/images.jpg" /></a></div>
<br />
I think this girl may have Masto or Lupus, but I'm not sure. She has
something obviously wrong with her face. Do you envy her? I ask this,
because so many complain about people "pestering" them about not
looking sick. This looks painful to me, and I do not envy her. I am
grateful that I have to answer questions, and not deal with this skin condition. Especially if it is severe Masto or Lupus, neither are fun.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-puxGVCCNiVs/UB20A3S_ssI/AAAAAAAAA2Q/ndDbsuO8eW4/s1600/parapelegic.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://4.bp.blogspot.com/-puxGVCCNiVs/UB20A3S_ssI/AAAAAAAAA2Q/ndDbsuO8eW4/s200/parapelegic.jpg" width="133" /></a></div>
<br />
<br />
Last one. This guy is actually pretty good looking. He's in a wheel
chair. There are lots of really good looking people in a wheel chair,
or missing limbs, or with minor deformities. Are they "visibly" sick?
Do they deserve a handicap parking spot more than us "invisibly sick" folks? Nope.<br />
<br />
<br />
<br />
We really are very superficial in this country, and in others as well
I'm sure. We are judging people based on their outsides, and being
judged as well. But is it really insulting and so terrible to "not
loook sick" ???? Nope. Most people don't mean any harm by it, they
just don't know. And my point is - none of us do.<br />
<br />
Again, I commend people trying to advocate for awareness. But I feel
its time to start taking some responsibility and educating the public
and our loved ones. I know many people deal with insensitive family and
friends who don't understand. Well, show them the spoon theory. Play
the wonderful video by DINET called Changes about POTS. Explain to them
in terms they will understand, like having the flu, running up stairs,
and other situations that people can relate to. Because we all know
that until you have really experienced it, you have no idea what it
really FEELS like. I have no clue what it's like to have cancer, or not
be able to feel my legs, I don't pretend to. If doing those things
does not improve how someone views you and treats you, then chances are
they wouldn't be very supportive if you were visibly sick either.<br />
<br />
And if you are tired of people staring when you park in the handicap
spot, take the time to explain to them whats wrong. Start telling
people. Volunteer to work with a charity and promote awareness for your
condition. Do something proactive.<br />
<br />
<span style="font-size: medium;"><i><b>SPEAK UP AND BECOME VISIBLE.</b></i></span><br />
We joked about creating a sign that we could wear to explain what is
wrong. Well - I have a few solutions. This blog post inspired these,
and some will be in the Dysautonomia SOS awareness shop. They are silly
(of course), but may spark conversation and allow for you to explain a
little easier why you are laying on the floor of a store taking a break
from shopping. <br />
<br />
1. The giant tote you can carry while getting out of your vehicle:<br />
<br />
<div style="line-height: 150%; text-align: center;">
<a href="http://www.zazzle.com/ask_me_why_i_park_here_bag-149873118246708785?gl=DysautonomiaSOS&rf=238837801116539106"> <img alt="Ask Me Why I Park Here Bag" src="http://rlv.zcache.com/ask_me_why_i_park_here_bag-p149873118246708785en84x_325.jpg" style="border: 0;" /> </a> <br />
<a href="http://www.zazzle.com/ask_me_why_i_park_here_bag-149873118246708785?gl=DysautonomiaSOS&rf=238837801116539106">Ask Me Why I Park Here Bag</a> by <a href="http://www.zazzle.com/dysautonomiasos*">DysautonomiaSOS</a> <br />
<br />
<br />
<div style="text-align: left;">
2. Embrace your Dysautonomia Diva (I make sick look good): </div>
<div style="text-align: left;">
</div>
</div>
<br />
<div style="line-height: 150%; text-align: center;">
<a href="http://www.zazzle.com/dysautonomia_diva_shirt-235196598850949510?rf=238837801116539106"> <img alt="Dysautonomia Diva Shirt" src="http://rlv.zcache.com/dysautonomia_diva_shirt-re41d3d59eb774e7ea0f5ebcce8cb420d_f0cjs_325.jpg?bg=0xffffff" style="border: 0;" /> </a> <br />
<a href="http://www.zazzle.com/dysautonomia_diva_shirt-235196598850949510?rf=238837801116539106">Dysautonomia Diva Shirt</a> by <a href="http://www.zazzle.com/dysautonomiasos*">DysautonomiaSOS</a> <br />
<br />
<br />
<div style="text-align: left;">
3. Advertise that you or your loved one is gravitationally challenged:</div>
<div style="text-align: left;">
</div>
</div>
<br />
<div style="line-height: 150%; text-align: center;">
<a href="http://www.zazzle.com/gravitationally_challenged_tee-235371651760598489?rf=238837801116539106"> <img alt="Gravitationally Challenged Tee" src="http://rlv.zcache.com/gravitationally_challenged_tee-r1f9b75fe1fe54b91bce28326dff4e92a_f0czn_325.jpg?bg=0xffffff" style="border: 0;" /> </a> <br />
<a href="http://www.zazzle.com/gravitationally_challenged_tee-235371651760598489?rf=238837801116539106">Gravitationally Challenged Tee</a> by <a href="http://www.zazzle.com/dysautonomiasos*">DysautonomiaSOS</a> <br />
<i><span style="font-size: medium;"><b><br /></b></span></i> </div>
<i><span style="font-size: medium;"><b>IN CONCLUSION:</b></span></i> <br />
I hope by this to only start a conversation. I am not criticizing
anyone, and again - I respect the efforts made by the chronically ill
"invisible" community to get the word out in what ever way they can.
But I hope that we can all start to speak up, stand up (if you are
able), and be visible - and teach people (especially the medical world)
about Dysautonomia and other conditions that may not be physically
apparent, and start using more assertive terms and labels to promote and
affect change. <br />
<br />
<span style="font-size: x-large;"><b>My hope is the focus will be on "chronic illness" instead of "invisible
illness" - so we can name the real problem. It's not that you can't see
what's wrong, but that what is wrong is chronic, painful, relentless,
hard to understand, and life changing.</b></span><br />
<br />
Love to you all,<br />
Claire Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-55213790885436604252013-04-16T07:41:00.002-04:002013-04-16T07:41:33.367-04:00Taking a break...<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-frE8_qL8KJU/UW04hD5z0sI/AAAAAAAABvM/Qft6Jufn3k0/s1600/keep-calm-and-peace-out-90.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://3.bp.blogspot.com/-frE8_qL8KJU/UW04hD5z0sI/AAAAAAAABvM/Qft6Jufn3k0/s200/keep-calm-and-peace-out-90.png" width="142" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Peace out homies (for a bit)</td></tr>
</tbody></table>
As you may have noticed, have not been posting here much. This has never been a narative blog, I've tried to keep it science based. That takes a lot of work, and for now, my limited energy and time spent of that type of writing will be devoted to <a href="http://www.dysautonomiasos.org/" target="_blank">Dysautonomia SOS</a>.<br />
<br />
Dysautonomia SOS is a nonprofit, with a board of directors, medical advosors, the works! I feel like I can affect more change via that platform at this point. My health has been declining unfortunately, with no treatment successes beyond IV fluids, so I have to pick and choose where my spoons go.<br />
<br />
I'm going to leave STOP POTS up as a resource, BUT WILL NOT ANSWERING EMAIL. If you need support, please head to the <a href="http://www.dysautonomiasos.com/" target="_blank">Dysautonomia SOS</a> page and contact via that website, or look through the many resources there. Much of what is on this blog (especially the "Find your POTS Cause stuff) is being formally rewritten for the nonprofit and will be up in the coming months.<br />
<br />
Thank you for understanding! I hope this page continues to be of help to others!<br />
Claire<br />
Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com1tag:blogger.com,1999:blog-7709891692454052883.post-79207681469406077492013-01-18T10:35:00.000-05:002013-01-18T10:46:16.509-05:00Anniversaries, POTS Perspectives, Suggestions and Such<a href="http://3.bp.blogspot.com/-izIGZyOjIxc/UPlo-WRUGwI/AAAAAAAABeM/mvgIgtLYY-Q/s1600/480743_10200128248757325_1855137559_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://3.bp.blogspot.com/-izIGZyOjIxc/UPlo-WRUGwI/AAAAAAAABeM/mvgIgtLYY-Q/s200/480743_10200128248757325_1855137559_n.jpg" width="200" /></a><span style="font-size: large;"><b>I have not written a post in a long time, since we have been furiously working on the <a href="http://www.dysautonomisos.org/" target="_blank">Dysautonomia SOS website.</a><span style="font-size: large;"> </span>I also have been doing a few "normal<span style="font-size: large;">" things<span style="font-size: large;"> and living life a bit.</span></span> </b></span><br />
<br />
<br />
BUT! Last month marks two big health anniversaries for me - it has now been 10 years since my first <a href="http://www.dysautonomiasos.com/#!pots-the-basics/c19qi" target="_blank">POTS</a> episode in the Florida Keys, and 2 years since I became completely disabled by it. At least they both happened in the same month, right? So I can think about both, reflect, yadda yadda yadda, and move on. Having to do this twice would have been annoying.<br />
<br />
So ten years. Did I think this would be going on for a decade? NOPE. But it has.<br />
<br />
Unless you are super lucky and see an amazing doctor when you first get sick with this, like the one's on our <a href="http://www.dysautonomiasos.com/#!medical-advisory-committee/cw04" target="_blank">Advisory Committee</a>, when diagnosed, patients usually hear one of three things:<br />
<br />
"Oh, POTS is no big deal, you'll grow out of it"<br />
<br />
~or~<br />
<br />
"I have no clue how to treat this, NEXT"<br />
<br />
~or~<br />
<br />
"It's just anxiety, take some Zoloft"<br />
<br />
I have heard all of these. The only one that has been true is the second. I actually appreciate when a physician admits they don't know what to do with me, instead of making something up. Up until I was super-dooper sick two years ago, I heard all three regularly. It took me almost dying and being in the hospital for 9 months to be taken seriously.<br />
<br />
And now, 2 years have passed. So what has changed? Well - since being released from the prison, I mean hospital - I definitely have improved. But not because of any new drugs. And not quickly. The things that jump started me getting up and moving a bit have been three fold:<br />
<br />
<a name='more'></a><br />
<br />
<span style="font-size: large;"><b>1. IV fluids at home. </b></span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-Ijs8T2hDt8k/UPlpCb_KuTI/AAAAAAAABek/87fRZFKr7xU/s1600/391837_10200338895543363_1166297021_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://4.bp.blogspot.com/-Ijs8T2hDt8k/UPlpCb_KuTI/AAAAAAAABek/87fRZFKr7xU/s200/391837_10200338895543363_1166297021_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I made it upstairs!</td></tr>
</tbody></table>
These have been a life saver, and my tolerance for standing and activity went from basically a minute or two, to sometimes being up walking and moving for 10 minutes. Just last weekend I made it up my stairs to my son's room for the first time since we moved back here. On my butt, feeling like dying, took me three days and a few bags of fluids to recover, but I made it! I can do short spurts of gardening, I sit up with my legs down, and do not get dizzy as quickly, nore do my feet turn lovely shades of red/purple as quickly. So that is progress. It started with IV fluids - a big thank you to my amazing doc who prescribed them!<br />
<br />
<b>My thoughts on IV fluid treatment</b>: They are temporary. They allow a patient to get reconditioned and transition off. The goal is not to stay on fluids for life, it is to get conditioned enough or find other meds and treatments that work so the IV's can be on an emergency basis only. Why so many doctors are against this is beyond me! Even if my veins give out (which they are starting to - and I can not get a port due to blood clotting issues), I have made strides I never would have otherwise. I do not want to spend hours hooked up to an IV multiple times a week for life, but for now, it's allowing me to increase my endurance. I'm hoping to talk my doctor into doing a publication in support for temporary IV fluid therapy for POTS (if you are reading this - you know who you are!) for <a href="http://www.dysautonomissos.org/" target="_blank">Dysautonomia SOS</a>. There is a ton of literature to support this, all related to the <a href="http://stoppotsvirginia.blogspot.com/2012/08/hydration-salt-and-peeing-renin.html" target="_blank">RAAS system</a> in POTS patients. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-EZWuHQmyQy4/UPlo-_DTjUI/AAAAAAAABeU/t8fvkQ2rHG4/s1600/67703_4987949024867_1201335674_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://4.bp.blogspot.com/-EZWuHQmyQy4/UPlo-_DTjUI/AAAAAAAABeU/t8fvkQ2rHG4/s200/67703_4987949024867_1201335674_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Outside! With everyone!</td></tr>
</tbody></table>
<span style="font-size: large;"><b>2. Family Support.</b> </span><br />
My parents moved down to be close to my family back in April, and we moved back into our (little) town-home that has been modified so I can get around - except for those cursed stairs. Having my parents help with the baby daily, and being able to push myself both on my own and with PT has been a God send. Before, I had to be very conservative, because if I passed out alone with a baby at home we both would be in trouble. Now I have help nearby, and I get breaks throughout the day, so I can push my activity level. I'm very blessed to have this support - and an amazing husband and parents to help.<br />
<br />
If you do not have family support, try to find friends, a church, or local programs that can help. Doing this alone is not preferable. Google "disability services (enter your zip code)" and "disability charities (enter your zip code/city)" to start hunting for resources. Contact your local Social Services office. Check out <a href="http://www.dysautonomiasos.com/#!disability-resources/cz87" target="_blank">this page</a> for more disability resources as well.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-sYIILt2y99U/UPlpe3VgotI/AAAAAAAABfA/u5KMoY5bUKI/s1600/094.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-sYIILt2y99U/UPlpe3VgotI/AAAAAAAABfA/u5KMoY5bUKI/s320/094.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My parents taking the kids to see Santa</td></tr>
</tbody></table>
<br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">3. Reconditioning.</span></b><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-_rOVum5puHI/UPlo-O-esII/AAAAAAAABeI/BeG86ujVsnU/s1600/281444_4779503133850_1881749312_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://4.bp.blogspot.com/-_rOVum5puHI/UPlo-O-esII/AAAAAAAABeI/BeG86ujVsnU/s200/281444_4779503133850_1881749312_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kids with me at the hospital in Oct</td></tr>
</tbody></table>
I spent three weeks back in the hospital in October after a stroke/TIA scare, and 10 days of that was in an inpatient Physical Therapy program. I struggle with exercise, because I get physically ill from doing too much (fever, swollen gland, flu aches, the works). Finding that line - and not crossing it - is tough. My Type-A self wants to go full blast at everything, so it is hard to step on the brakes. While in this program, I was able to try a few POTS meds (both were a major FAIL), do some hardcore PT and OT, and not "worry" about conserving energy for family or crashing. If you are severely deconditioned, I highly recommend it! There are inpatient PT programs all over, just be sure to call or speak with someone about their knowledge of POTS, and even if they don't know about POTS, if they are willing to listen, read, and chat with your doctor it may be a good option.<br />
<br />
____________________________<br />
<br />
So - do I know what is causing my POTS and autonomic neuropathy? Even after 10 years and all of this? NOPE. But we have ruled things out, and I will keep plugging away. I obviously have more going on - AS WE ALL DO - because <a href="http://stoppotsvirginia.blogspot.com/2012/04/what-is-causing-your-pots-and-why-it-is.html" target="_blank">POTS is a syndrome and not a disease</a>. And neuropathy is ALWAYS caused by something. It's hard not to get burnt out, but I feel if the doctors had known my underlying cause, my pregnancy may have not been so tough, and I may not have died, and I may not have withered away into a deconditioned state while on 9 months of forced bed rest in the hospital, not even allowed to get up to use the bathroom (yay for bedside commodes!).<br />
<br />
<b><span style="font-size: large;">Biggest lesson: </span></b><br />
Keep pushing for answers! But also don't let it consume you. Live life to the fullest with where you are at. Accept that people will fade away, you learn who your true friends are, and value those that stick around. Find a good doctor who will listen, and try to help you improve your quality of life. Because even if I find some crazy underlying (or painfully obvious and overlooked) cause, if my quality of life sucks, it's all for nothing, and I will have wasted those years looking. <br />
<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-CAiCqs6IC38/UPlqWSVAIBI/AAAAAAAABfI/CXNdyAEDWlg/s1600/600848_420434171311936_350066654_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="309" src="http://1.bp.blogspot.com/-CAiCqs6IC38/UPlqWSVAIBI/AAAAAAAABfI/CXNdyAEDWlg/s320/600848_420434171311936_350066654_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">If I was a chicken...</td></tr>
</tbody></table>
<span style="font-size: large;"><i><b>Wishing you balance, peace, a fighting spirit, vertical success, and may the force be with you. Always.</b></i></span><br />
<br />
--Claire<br />
<br />
PS - Shameless plug: check out the <a href="http://horizontaldesigns.blogspot.com/" target="_blank">new little business I started </a>making custom crochet stuff and jewelry! Will have custom awareness stuff on there soon!<br />
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-37727766090755191192012-12-03T09:22:00.000-05:002012-12-03T09:22:08.366-05:00It's here! Dysautonomia SOS's Website is FINALLY Here!<span style="font-size: large;"><b>YAY! <a href="http://www.dysautonomiasos.org/" target="_blank">The Dysautonomia SOS site is up and running.</a> </b></span><br />
<br />
<span style="font-size: large;"><b>Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!</b></span><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-s6MIFKa75Ys/ULy1A-JWRyI/AAAAAAAABHo/xV7t7xpBLoU/s1600/MentoringProgram.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="http://1.bp.blogspot.com/-s6MIFKa75Ys/ULy1A-JWRyI/AAAAAAAABHo/xV7t7xpBLoU/s320/MentoringProgram.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-YCVZsSyedtQ/ULy1G9ZfzBI/AAAAAAAABHw/pEWsB-PYSIU/s1600/bc1a2b5b-ed23-4a21-9241-a79b3887efb7wallpaper.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-YCVZsSyedtQ/ULy1G9ZfzBI/AAAAAAAABHw/pEWsB-PYSIU/s320/bc1a2b5b-ed23-4a21-9241-a79b3887efb7wallpaper.jpg" width="320" /></a><a href="http://3.bp.blogspot.com/-jFNGA-JV9yg/ULy1IrRSf_I/AAAAAAAABH4/-hmdgdPW7Ks/s1600/web.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-jFNGA-JV9yg/ULy1IrRSf_I/AAAAAAAABH4/-hmdgdPW7Ks/s1600/web.jpg" /></a></div>
<br />
<br />
<span style="font-size: large;"><b>Thanks to everyone that helped make this a success! </b></span><br />
<span style="font-size: large;"><b>--Claire </b></span>Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-55011217018652521972012-11-27T20:44:00.001-05:002012-11-27T20:45:32.659-05:00Find Others! Join The Dysautonomia Social Media Directory!Let’s connect online! Add yourself to our interactive map and find
others online and in your area. You can upload pictures, online contact
info, blogs, websites, and more!<br />
<a class="ot-anchor" href="https://www.zeemaps.com/map?group=460425#">https://www.zeemaps.com/map?group=460425#</a><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-YgVwwkLnV7M/ULVsWVc4x_I/AAAAAAAABHI/peTWuDmdaRs/s1600/map.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="http://1.bp.blogspot.com/-YgVwwkLnV7M/ULVsWVc4x_I/AAAAAAAABHI/peTWuDmdaRs/s400/map.png" width="400" /></a></div>
<br />
<br />
***Under
“Additions” menu, click on either the simple or detailed add form. You
can select to be added as a patient, spouse, parent, or family/friend.<br />
THANKS!<br />
<a class="ot-anchor" href="https://www.zeemaps.com/map?group=460425#">https://www.zeemaps.com/map?group=460425#</a>Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-51048189142091756772012-11-23T08:43:00.000-05:002012-11-23T08:43:33.800-05:00POTS in the news! <b>Recently, there was a two part series about POTS that was very well written, and included the stories of the son of one of Dysautonomia SOS's volunteer's, and myself!</b><br />
<br />
Here is a link to Part 1, which includes great info about POTS, and the story of John, a teen battling POTS with an amazing attitude:<br />
<br />
<h1>
Is it depression, anxiety or POTS? The first article of a two-part series</h1>
<div class="category-head">
<a href="http://chestnuthilllocal.com/blog/category/locallife/" rel="category tag" title="View all posts in Local Life">Local Life</a> <span class="date">November 13, 2012</span>
<span class="comments-head"><a data-disqus-identifier="18099 http://chestnuthilllocal.com/blog/?p=18099" href="http://chestnuthilllocal.com/blog/2012/11/13/is-it-depression-anxiety-or-pots-the-first-article-of-a-two-part-series/#disqus_thread" title="Comment on Is it depression, anxiety or POTS? The first article of a two-part series">4 Comments and 1 Reaction</a></span>
</div>
<div class="wp-caption alignright" id="attachment_18100" style="width: 310px;">
<a href="http://chestnuthilllocal.com/blog/wp-content/uploads/2012/11/STORY_POTS-John-Point-2.jpg"><img alt="" class="size-medium wp-image-18100" height="225" src="http://chestnuthilllocal.com/blog/wp-content/uploads/2012/11/STORY_POTS-John-Point-2-300x225.jpg" title="STORY_POTS John Point 2" width="300" /></a><div class="wp-caption-text">
John Point</div>
</div>
<strong>by Sue Ann Rybak</strong><br />
<strong></strong>John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court.<br />
But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, headaches.<br />
“John was on the cusp of turning 13 and had really started to grow a bunch,” Janet Point, his mother said.<br />
At first his parents and the doctors thought he had mononucleosis.
But after a battery of tests, including CAT scans, an electrocardiogram
(EKG) and allergy tests, and a heavy dose of antibiotics, the doctors
could find nothing wrong with him.<br />
“Somewhere around the third or fourth test for mono, the doctor said,
‘Well maybe he’s just making this up,’” Janet said. “I thought, ‘I
don’t think he has invented this.’”<br />
“You just couldn’t get John out of bed in the morning using proper or
improper motivational techniques,” said Steve Point, his father.
“Yelling at him and dragging him out of bed didn’t work. But, he didn’t
seem like he was so sick that he couldn’t get out of bed.”<br />
Finally, desperate to find an answer, John’s Dad sent out emails to members of the Chestnut Hill Sports Club.<br />
“There is a giant email address list that goes around and there are a
number of physicians on the list,” Steve said. “So, I thought maybe
someone can recommend a doctor at CHOP. (Children’s Hospital of
Philadelphia), who specializes in weird diseases.”<br />
Steve said someone recommended Dr. Mark Magnusson at CHOP, and he
performed a “tilt-table test,” which is one of the techniques for
detecting POTS (postural orthostatic tachycardia syndrome). During a
tilt table test, a patient lies on a table that moves from a horizontal
to a vertical position. Measurements of heart rate and blood pressure
are taken while lying flat and then again at intervals while tilted
upright. The optimal duration of tilt testing in patients suspected of
having POTS is 40 minutes or until they faint, at which point the test
is concluded.<br />
It was February 2010 when Magnusson diagnosed John with POTS.<br />
According to the National Institute of Neurological Disorders and
Stroke, POTS is a condition in which an excessively reduced volume of
blood returns to the heart after an individual stands up from a lying
down position. The primary symptom is lightheadedness or fainting
accompanied by a rapid increase in heartbeat of more than 30 beats a
minute, or a heart rate that exceeds 120 beats a minute, within 10
minutes of rising.<br />
<a href="http://chestnuthilllocal.com/blog/2012/11/13/is-it-depression-anxiety-or-pots-the-first-article-of-a-two-part-series/" target="_blank">READ MORE HERE</a><br />
<br />
Here is Part 2 (featuring me!): <br />
<br />
<h1>
POTS victim has hope despite limited activity</h1>
<div class="category-head">
<a href="http://chestnuthilllocal.com/blog/category/locallife/" rel="category tag" title="View all posts in Local Life">Local Life</a> <span class="date">November 21, 2012</span>
<span class="comments-head"><a data-disqus-identifier="18406 http://chestnuthilllocal.com/blog/?p=18406" href="http://chestnuthilllocal.com/blog/2012/11/21/pots-victim-has-hope-despite-limited-activity/#disqus_thread" title="Comment on POTS victim has hope despite limited activity">0 Comments and 1 Reaction</a></span>
</div>
<div class="wp-caption alignright" id="attachment_18407" style="width: 310px;">
<a href="http://chestnuthilllocal.com/blog/wp-content/uploads/2012/11/POTS_recent-photo-Claire-and-her-baby-girl-.jpg"><img alt="" class="size-medium wp-image-18407" height="225" src="http://chestnuthilllocal.com/blog/wp-content/uploads/2012/11/POTS_recent-photo-Claire-and-her-baby-girl--300x225.jpg" title="POTS_recent photo Claire and her baby girl" width="300" /></a><div class="wp-caption-text">
Claire Martin with her baby girl, Gabriella.</div>
</div>
<strong>by Sue Ann Ryback</strong><br />
<strong></strong>(The second of two articles)<br />
Claire Martin, 34, founder of Dysautonomia SOS: Searching Out
Solutions, knows first-hand the obstacles and challenges of living with
POTS (postural orthostatic tachycardia syndrome).<br />
The mother of two young children, Lukas, 4, and Gabriella, 14-months,
Martin had her first POTS episode at 24 while studying marine biology
in graduate school.<br />
“I was setting up an underwater research site in the Keys,” Martin
wrote in an email during her twelfth day in the hospital on Wednesday,
Oct. 24, “when out of nowhere, I had an extreme bout of tachycardia and
felt like I was going to faint for the first time.”<br />
Martin’s primary symptoms at first were bouts of tachycardia, lightheadedness, and fainting.<br />
In 2003, Martin was forced to drop out of graduate school because her symptoms increased in severity and frequency.<br />
Martin, who was studying sponge ecology and growth rate studies in
the Keys said, “I was having trouble functioning, and I definitely
couldn’t scuba dive anymore to continue my research.”<br />
Martin, who now lives in Virginia Beach, Va., said she was a very
active child, teenager and young adult. While she doesn’t know the exact
cause of her POTS, she suspects it could have been the result of a
spinal fusion in 1999. But, she didn’t develop POTS symptoms until years
later.<br />
<a href="http://chestnuthilllocal.com/blog/2012/11/21/pots-victim-has-hope-despite-limited-activity/#" target="_blank">READ MORE HERE</a><br />
<br />
_____________________________________________________________ <br />
We are very thankful to see POTS in the news, and especially for a reporter who takes the time to convey accurate information. While I don't see myself as a victim, more of a butt-kicker (so to speak), I am so grateful to have been featured in this! <br />
<br />
<b>I encourage you all to reach out to local newspapers! Dysautonomia SOS has a press guide that can help you have your loved one (or yourself) featured locally, and spread the word about POTS and Dysautonomia. This is a great tool for upcoming events, and to make this condition a household name. <a href="mailto:info@dysautonomiasos.org" target="_blank">Contact us if you'd like help!</a></b><br />
<br />
I'll be back writing more soon, we are in the final stages of editing <a href="http://www.dysautonomiasos.org/" target="_blank">the new website</a>, which has been taking all of my energy. Love to you all!<br />
Claire <br />
<br />
Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-29361224988639326252012-10-26T18:18:00.000-04:002012-12-03T09:36:20.640-05:00Dysautonomia Awareness Month Wrap Up Events!Well, only a few days are left in the first ever Dysautonomia Awareness Month! There is still a lot going on, we will end the month with a bang. Here is a quick break down of 2 cool remaining events. <br />
<br />
<a name='more'></a><br /><br />
Event 1: <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-vQSwClPD9X0/UIq7cT9rCcI/AAAAAAAABFk/h3g4nlDvV4w/s1600/541077_474211045945057_413312983_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-vQSwClPD9X0/UIq7cT9rCcI/AAAAAAAABFk/h3g4nlDvV4w/s320/541077_474211045945057_413312983_n.jpg" width="320" /></a></div>
<span style="font-size: large;"><b>The Tweet-A-Thon and Tweet Chat are scheduled for Sunday at 8 PM EST:</b></span><br />
<br />
Here is the post from the Dysautonomia SOS Blog:<br />
<br />
<div class="lightpanel">
<div class="caption photocaption">
<b>SUNDAY! The ORIGINAL Tweet-A-Thon, taking place with anyone who wants to be involved. Let’s get #dysautonomia trending </b><i><b>the right way!</b> </i><br />
<br />
<i>For something to <a href="http://techtips.salon.com/mean-trend-twitter-4361.html" target="_blank">trend</a>
on Twitter, we all need to tweet at the same time! Not spam people with
tweets all day long, but tweet #dysautonomia in mass. That was the
original plan on the date above. Other organizations have chosen to take
this idea we came up with and do it their way on a different day, and
that is fine - we want as much dysautonomia publicity as possible! BUT!
We have to be careful to NOT SPAM, or it defeats the purpose and ends up
clogging up people’s twitter feeds, and they don’t click on links to
more info. </i><br />
<br />
Our suggestions for participation, in conjunction with <a href="http://www.dinet.org/" target="_blank">DINET</a>, can be found <a href="http://dysautonomiasos.tumblr.com/post/33389343654/dysautonomiatweetathon" target="_blank">here</a>.<br />
<br />
<i><b>We also will host a #dysautonomia <a href="http://articles.chicagotribune.com/2012-06-27/features/ct-tribu-twitter-chat-20120627_1_twitter-chat-hashtag-twitter-account" target="_blank">TWITTER CHAT</a> at the same time - SUNDAY 8PM EST.</b></i><br />
<i><b> </b> </i><br />
We want to hear how your condition affects you!<br />
<br />
The world needs to know! Include or search for #dysautonomiaTC (for
Twitter Chat) to participate. We will ask questions to get the
conversation going, but feel free to participate as you see fit.<i></i><br />
<i><br /></i>
<a href="http://2.bp.blogspot.com/-gpe3OdJ8sGk/UCO28BbSZBI/AAAAAAAACt0/-kmbSEDtdE0/s1600/120809-090856.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-gpe3OdJ8sGk/UCO28BbSZBI/AAAAAAAACt0/-kmbSEDtdE0/s320/120809-090856.jpg" /></a><b>We are dedicating the event to an amazing lady who actually came up with this idea, Miss Nikki Ann</b>. She suffers from a multitude of dysautonomias and other health
issues, including POTS, PAF, MCAD, and many many more. She originally
came up with the idea to tweet about dysautonomia like crazy, and we
(being me, Claire) discussed it at length in terms of organization and
how to rally the online troops. She has been very sick, and busy trying
to get treatment and firm diagnoses, but she still takes time to be very
active in the online dysautonomia activist community. Find her story
and learn more about her here:<br />
On YouTube: <a href="http://www.youtube.com/user/missnikkiann" target="_blank">MissNikkiAnn</a><br />
On Twitter: <a href="http://www.twitter.com/missnikkiann" target="_blank">@MissNikkiAnn</a><br />
Blog: <a href="http://missnikkiann.blogspot.com/" target="_blank">Miss Nikki Ann’s House</a><br />
<br />
<br />
You can also find a special feature she did for our website (<a href="http://www.dysautonomiasos.org/" target="_blank">www.DysautonomiaSOS.org</a>) once we are launched!<br />
<br />
<b>Come chat (#dysautonomiaTC) and tweet about #dysautonomia - at 8 PM EST THIS SUNDAY!!!</b><br />
<br />
<b>Let’s do this. </b><br />
<b>_____________________________________________________________</b><br />
Event 2:<b></b><br />
<br />
<b>THUMBS UP FOR AWARENESS!</b><br />
<b>Monday, Oct 29th! </b><br />
<b>Created by <span class="fsm fwn fcg"><a data-hovercard="/ajax/hovercard/user.php?id=1156726182" href="https://www.facebook.com/cathi.mitchell" id="js_0">Cathi Godgirl Mitchell</a></span></b><br />
<br />
<span itemprop="description"><span class="fsl"></span></span><br />
<div class="text_exposed_root text_exposed" id="id_508b0ac71e0aa4868251122">
<span itemprop="description"><span class="fsl"><a href="http://4.bp.blogspot.com/-sENe_ovi_8Y/UIsLPzMu58I/AAAAAAAABGI/R2tkP_so0mc/s1600/203604_357529647674842_562622848_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-sENe_ovi_8Y/UIsLPzMu58I/AAAAAAAABGI/R2tkP_so0mc/s1600/203604_357529647674842_562622848_n.jpg" /></a>In
honor of Dysautonomia Awareness Month, paint or color JUST your thumb
with a shade of royal blue nail polish on Monday, October, 29, 2012.
When anyone asks you why you did it, give them a thumbs up for asking
and be prepared to tell them about Dysautonomia. Education is the key
and it is only by spreading awareness do we have a chance of ever
finding a cure for this dreaded disease. So tell the person who asked
about the loved one, friend, or neighbor, that you know that has it. </span></span></div>
<span itemprop="description"><span class="fsl">
</span></span>
<br />
<div class="text_exposed_root text_exposed" id="id_508b0ac71e0aa4868251122">
</div>
<span itemprop="description"><span class="fsl">
</span></span>
<div class="text_exposed_root text_exposed" id="id_508b0ac71e0aa4868251122">
<span itemprop="description"><span class="fsl">Tell them how to say it. </span></span><br />
<div class="text_exposed_show">
<span itemprop="description"><span class="fsl">(Dis - auto -
know- me - ah). Tell them that it is an incurable disease that causes
the autonomic nervous system to dysfunction and causes problems with
blood circulation and other body systems. Tell them that it also causes
other debilitating symptoms. Tell them any other information that you
know about Dysautonomia and direct them to websites like www.dinet if
they want to know more. Lastly, make sure to conclude the conversation
with another thumbs up...... for YOU for helping to spread awareness!
Please spread the word and thanks for considering participating in
this effort! Cathi</span></span></div>
<div class="text_exposed_show">
</div>
<div class="text_exposed_show">
<span itemprop="description"><span class="fsl">Facebook event link: <a href="https://www.facebook.com/events/357529647674842/">https://www.facebook.com/events/357529647674842/</a> </span></span></div>
<div class="text_exposed_show">
<span itemprop="description"><span class="fsl"><br /></span></span></div>
<div class="text_exposed_show">
<span itemprop="description"><span class="fsl">PS - WE LOVE LOVE LOVE THIS IDEA! Cudos to Cathi!</span></span></div>
<div class="text_exposed_show">
<span itemprop="description"><span class="fsl">______________________________________________________________________</span></span></div>
<div class="text_exposed_show">
<span itemprop="description"><span class="fsl"><br /></span></span></div>
<div class="text_exposed_show">
<span itemprop="description"><span class="fsl">Thanks! If you have other events you know of your come up with, even last minute - let us know! </span></span></div>
</div>
<span itemprop="description"><span class="fsl">
</span></span></div>
</div>
Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-27265582975872341342012-10-21T17:37:00.001-04:002012-10-21T17:38:15.112-04:00Join the Social Media Dysautonomia Directory!Hey folks! Wondering where all those people are online that have dysautonomia? It can feel pretty lonely having a weird condition that no one has heard
of, but supposedly a bunch of people actually have! We just have to
find each other! <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-8bDGudkZ0Cw/UIRqCLmMgiI/AAAAAAAABE4/iG9FQ5TsUnM/s1600/baxkground.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://3.bp.blogspot.com/-8bDGudkZ0Cw/UIRqCLmMgiI/AAAAAAAABE4/iG9FQ5TsUnM/s320/baxkground.jpg" width="320" /></a></div>
<br />
We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.<br />
<br />
One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.<br />
<br />
To register, you can click <a href="http://eepurl.com/qQUo5" target="_blank">THIS LINK</a>, or fill out the form below:<br />
<br />
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<h2>
Subscribe to our Social Media Dysautonomia Directory:</h2>
<span style="font-size: small;">Welcome to the Social Media Dysautonomia Directory! Provide as much or
as little info as you like, and find others online that deal with
dysautonomia. We will not send emails or contact you with the info
provided, this directory serves as a way to connect with people and find
support online. As always, be careful to only list info you are
comfortable having displayed publicly, and we are not responsible for
any interaction on social media taking place. You can remove yourself
from the directory anytime.</span><br />
<h2>
<span style="font-size: small;"><b>YOUR EMAIL ADDRESS WILL NOT BE DISPLAYED ON OUR WEBSITE.</b></span>
<span style="font-size: small;"> </span></h2>
<div class="indicates-required">
<span class="asterisk">*</span> indicates required</div>
<div class="mc-field-group">
<label for="mce-EMAIL">Email Address <span class="asterisk">*</span>
</label>
<input class="required email" id="mce-EMAIL" name="EMAIL" type="email" value="" />
</div>
<div class="mc-field-group">
<label for="mce-FNAME">Online Name <span class="asterisk">*</span>
</label>
<input class="required" id="mce-FNAME" name="FNAME" type="text" value="" />
</div>
<div class="mc-field-group">
<label for="mce-MMERGE7">City, State, Country </label>
<input class="" id="mce-MMERGE7" name="MMERGE7" type="text" value="" />
</div>
<div class="mc-field-group">
<label for="mce-MMERGE3">Website/Blog </label>
<input class=" url" id="mce-MMERGE3" name="MMERGE3" type="url" value="" />
</div>
<div class="mc-field-group">
<label for="mce-MMERGE2">Facebook Page/Profile </label>
<input class="" id="mce-MMERGE2" name="MMERGE2" type="text" value="" />
</div>
<div class="mc-field-group">
<label for="mce-MMERGE4">Twitter @ Name </label>
<input class="" id="mce-MMERGE4" name="MMERGE4" type="text" value="" />
</div>
<div class="mc-field-group">
<label for="mce-MMERGE9">Instagram Name </label>
<input class="" id="mce-MMERGE9" name="MMERGE9" type="text" value="" />
</div>
<div class="mc-field-group">
<label for="mce-MMERGE5">Tumblr Name </label>
<input class="" id="mce-MMERGE5" name="MMERGE5" type="text" value="" />
</div>
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<label for="mce-MMERGE6">Other Social Media: </label>
<input class="" id="mce-MMERGE6" name="MMERGE6" type="text" value="" />
</div>
<div class="mc-field-group">
<label for="mce-MMERGE8">Diagnosis </label>
<input class="" id="mce-MMERGE8" name="MMERGE8" type="text" value="" />
</div>
<div class="clear" id="mce-responses">
<div class="response" id="mce-error-response" style="display: none;">
</div>
<div class="response" id="mce-success-response" style="display: none;">
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<div class="clear">
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<input class="button" id="mc-embedded-subscribe" name="subscribe" type="submit" value="Subscribe" /></div>
</form>
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_______________________________________________________<br />
<br />
The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website. <br />
<br />
Oh, and the TWEET-A-THON is next weekend! <a href="http://www.dinet.org/" target="_blank">DINET</a> is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-WXG_f1b2ODc/UIRq3pQWWhI/AAAAAAAABFA/RTyQ9KqHp8Y/s1600/tweet+copy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-WXG_f1b2ODc/UIRq3pQWWhI/AAAAAAAABFA/RTyQ9KqHp8Y/s320/tweet+copy.jpg" width="243" /></a></div>
<br />
<br />
Love to you all, and thank you for the continued support!<br />
<br />
ClaireAnonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-67783139190374103582012-09-28T12:27:00.003-04:002012-09-28T12:29:43.453-04:00POTS: The Basics<h3 class="post-title entry-title" itemprop="name">
<i>I'm re-upping this, as we are almost done with the new nonprofit website, and most of my new "material" will be headed over there. This a POTS 101 type summary, hopefully easy to understand and useful :) ---Claire </i></h3>
<h3 class="post-title entry-title" itemprop="name">
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: large;">POTS: An Overview
</span></span></h3>
<div class="post-header">
</div>
<h2>
<a href="http://dysautonomiasos.tumblr.com/POTS">Postural Tachycardia Syndrome</a></h2>
<span style="font-size: medium;"><b><span class="font_0"><span class="color_11"><span class="bold">POTS: The Basics</span></span></span></b></span><br />
<span class="font_0"><span class="color_11"><span class="bold"></span></span></span><span class="font_1">Find links to in depth information and resources for POTSies at on our Dysautonomia SOS <a href="http://www.dyautonomiasos.org/" target="_blank">website</a> (under construction).</span><br />
<span class="font_6"><br /><span class="color_16"><b>POTS</b>
is short for Postural Orthostatic Tachycardia Syndrome. It is
referred to by some physicians and researchers as Postural Tachycardia
Syndrome, or just Postural Tachycardia. It is a type of Orthostatic
Intolerance, and also a type of <a href="http://dysautonomiasos.tumblr.com/Dysautonomia" target="_blank">Dysautonomia</a>. Let’s break down what that name means:</span></span><br />
<span class="font_6"><span class="color_16"></span><br /><i><span class="color_18"><span class="italic"><span class="bold">Postural</span></span></span></i><span class="color_16"> means relating to posture, or a change in position.</span></span><br />
<span class="font_6"><span class="color_16"></span><br /><i><span class="color_18"><span class="italic"><span class="bold">Orthostatic</span></span></span></i><span class="color_16"> means relating to, or caused by erect posture (standing up).</span></span><br />
<br />
<span class="font_6"><i><span class="color_18"><span class="italic"><span class="bold">Tachycardia</span></span></span></i><span class="color_16"> refers to a rapid heart rate.</span></span><br />
<span class="font_6"><span class="color_16"></span><br /><i><span class="color_18"><span class="italic"><span class="bold">Syndrome</span></span></span></i><span class="color_16"> means a collection of symptoms, and not a disease. </span></span><span class="font_6"><span class="color_16">Technically,
a syndrome is defined as a group of signs and symptoms that occur
together and characterize a particular abnormality.</span></span><br />
<span class="font_6"><span class="color_16"><br />So, POTS is a
collection of symptoms that result from a heart rate increase when
standing up. When a person with POTS stands up, the heart pumps faster
to help keep the blood pressure up, and try to help the blood in their
body reach their brain and other vital organs. The body of a person
with POTS does not respond to gravity the same way a non-POTS person
does. </span></span><br />
<span class="font_6"><span class="color_16"><img src="http://media.tumblr.com/tumblr_m98c4q3NjW1rr4gc4.jpg" /></span></span><br />
<br />
<span class="font_6"><span class="color_16">The majority of POTS
patients are female, of child bearing age, and under 35. There are
thought to be anywhere from 500,000 to millions of people in the US with
POTS and other forms of Orthostatic Intolerance. There are no solid
published statistics or data at this time, these are estimates from the
major research centers that treat POTS.</span></span><br />
<br />
<a name='more'></a><br /><br />
<span class="font_0"><span class="bold"><span class="color_11"><b>DIAGNOSIS:</b></span></span></span><br />
<span class="font_6"><span class="color_16">In order to meet the most
recent POTS criteria for diagnosis, a person’s heart rate must increase
at least 30 beats per minute (BPM), or go above 120 BPM within 10
minutes of standing, and for kids/teens the requirement in 40 BPM. This
may happen with or without a change in blood pressure, and symptoms are
relieved by lying down. The recent definitions by some doctors say
that if your blood pressure drops significantly, you do not have POTS.
Most researchers and physicians also include that you must have symptoms
for 3-6 months.</span></span><br />
<br />
<span class="font_6"><span class="color_16"><img height="220" src="http://media.tumblr.com/tumblr_m98cij1aWx1rr4gc4.jpg" width="393" /></span></span><br />
<br />
<b><span class="font_0"><span class="bold"><span class="color_11">SYMPTOMS:</span></span></span><span class="font_6"><span class="bold"><span class="color_11"></span></span><span class="color_16"></span></span></b><br />
<span class="font_6"><span class="color_16">POTS symptoms can come
and go, and change in intensity. These are some of the more common
symptoms, but by no means is a complete list. POTS is complicated
because many patients have underlying or other conditions causing
symptoms, and it is hard to figure out which is causing each symptom,
and they can change from day to day – even hour to hour.</span></span><br />
<span class="font_6"><span class="color_16">• Lightheadedness<br />• Fainting or near fainting<br />• Visual blurring or tunnel vision<br />• Palpitations<br />• Tremulousness (shakiness) and weakness, especially of the legs<br />• Fatigue<br />• Exercise intolerance<br />• Hyperventilation<br />• Neck pain, also called “coat hangar pain”<br />• Shortness of breath<br />• Anxiety and panic feelings<br />• Chest pain<br />• Nausea and other stomach and digestions symptoms<br />• Acral coldness or pain (meaning in the extremities)<br />• Concentration difficulties (brain fog)<br />• Headaches and migraines<br />• Sweating problems, either too much or too little<br />• Increased heart rate while laying down<br />• Foot swelling and obvious blood pooling in the legs<br />• An increase in adrenalin levels in the blood (called norepinephrine and catecholamines)</span></span><span class="color_16"></span><br />
<b><span class="font_0"><span class="bold"><span class="color_11">CAUSES:</span></span></span><span class="font_6"><span class="bold"><span class="color_11"></span></span><span class="color_16"></span></span></b><br />
<span class="font_6"><span class="color_16">POTS is thought to be caused by many things, which is also known as being <span class="italic">heterogeneous</span>. You can find an in depth discussion of these, and POTS in general, </span><span class="color_16"><span class="bold"><a data-cke-saved-href="#%21POTS:%20In%20Depth/c1d0s" href="http://editor.wix.com/html/editor/web/renderer/edit/9025ae35-b388-41f8-ae76-d52eaac129e4?metaSiteId=129ee383-aa43-4e6b-bc98-915bd8cf54d4&editorSessionId=035C9C15-FB17-49E2-B67A-D27D5156C51B#%21POTS:%20In%20Depth/c1d0s" target="_self"><span class="color_18">here</span></a></span></span><span class="color_16">. Some of the things thought to cause POTS include:</span></span><br />
<span class="font_6"><span class="color_16">• Low blood volume, also called Hypovolemia.</span></span><br />
<span class="font_6"><span class="color_16"><br />• Blood pooling in
the extremities, also known as Acrocyanosis, sometimes caused by valve
or muscle pump defects in the legs, neuropathy (destruction of nerves),
and low blood volume. Other diseases and conditions can cause blood
pooling in the arms and legs as well.</span></span><br />
<span class="font_6"><span class="color_16"><br />• Autonomic
Neuropathy, which is when there is damage to the autonomic nerves.
Autonomic nerves are the nerves that control things that happen
unconsciously, like sweating. This damage can cause problems with the
signals between the brain and the body, including the heart and blood
vessels. It is estimated by the Mayo Clinic that up to 50% of all POTS
patients have some form of Autonomic Neuropathy.</span></span><br />
<span class="font_6"><span class="color_16"><br />• Denervation of the
legs, or a loss of nerve supply. Causes of denervation include disease,
chemical toxicity, physical injury, or intentional surgical interruption
of a nerve.</span></span><br />
<span class="font_6"><span class="color_16"><br />• Increased Angiotensin II and decreased Nitric Oxide (NO), which causes veins to not constrict properly.</span></span><br />
<span class="font_6"><span class="color_16"><br />• Autoimmune Diseases
such as Multiple Sclerosis, Sjogren’s, Lupus, Myasthenia Gravis,
Diabetes, Guillain-Barré Syndrome, Fibromyalgia, Amyloidosis,
Ankylosing Spondylitis, Raynaud’s, Celiac , Chronic Fatigue and Immune
Dysfunction Syndrome (CFIDS), Chronic Fatigue Syndrome -
also known as Myalgic Encephalomyelitis (ME), Autoimmune Autonomic
Ganglionopathy (AAG), Sarcoidosis, and general connective tissue
diseases are thought to either cause or be associated with POTS.</span></span><br />
<span class="font_6"><span class="color_16"><br />• Post-Viral or
Sudden Onset means that something sudden triggered POTS symptoms. A
virus, pregnancy, a car accident, a traumatic event (such as surgery), a
growth spurt, etc… brought out the underlying condition that is causing
POTS.</span></span><br />
<span class="font_6"><span class="color_16"><br />• There are a variety
of other diseases and syndromes are thought to cause POTS, including
Ehler’s-Danlos Syndrome, Adrenal Diseases such as Cushing’s and
Addison’s, Mast Cell Activation Syndrome (MCAS), Lyme Disease (and
associated co-infections), Mitochondrial Diseases, and Paraneoplastic
neurological syndromes.</span></span><br />
<span class="font_6"><span class="color_16"><br />• Other conditions
that can cause or have been associated with POTS include: Traumatic
Brain Injuries, Chiari Malformations, Gulf War Syndrome, Heavy Medal
Poisoning, Parasites (such as Chagas), Liver Cirrhosis, Mycoplasma
pneumonia, the Epstein-Barr Virus, the Nutcracker Syndrome, as well as
reactions to drugs and medications.</span></span><br />
<span class="font_6"><span class="color_16"><br />This is a LONG
growing and changing list, and you can find definitions, information,
and links to more information on these conditions </span><span class="color_18"><span class="bold">on our website</span></span><span class="color_16">.
We strongly urge you to look for the underlying cause of POTS, as
stated above – it is not a disease, it is a syndrome, and once you find
the cause your doctor may be able to treat the symptoms of POTS more
effectively.</span></span><br />
<br />
<span class="font_6"><span class="color_16">A full cardiac work up
should also be performed if you are told you have POTS to rule out any
structural or electrical issues with your heart. Conditions to rule out
that may be serious or life threatening, and symptoms may mimic or
cause POTS include structural abnormalities such as congenital defects
or “holes” in the heart, valve defects, cardiomyopathy, and cardiac
atrophy (deconditioning causing the heart to get smaller), to name a
few. </span></span><br />
<span class="font_6"><br /><span class="bold"><span class="color_11"></span></span></span><b><span class="font_0"><span class="bold"><span class="color_11">TESTING AND TREATMENT:</span></span></span></b><span class="font_6"><span class="color_16"></span></span><br />
<span class="font_6"><span class="color_16">Testing depends on the
symptoms of each individual patient. Find descriptions of the more
common autonomic tests on our website. Additional cardiac testing or
blood work may be performed as well. A thorough medical exam and
history will be taken, and the most common test to diagnose POTS is a
Tilt Table Test.</span></span><br />
<span class="font_6"><span class="color_16"><br />A Tilt Table Test,
also called a Head Up Tilt Test (HUTT), measures heart rate and blood
pressure when a patient goes from laying to standing. Some of these
have “beat to beat” monitoring of blood pressure, which is very useful
in seeing how a patients body responds to being upright.</span></span><br />
<span class="font_6"><span class="color_16"><img src="http://media.tumblr.com/tumblr_m98clhdedo1rr4gc4.gif" /></span></span><br />
<span class="font_6"><span class="color_16">POTS can also be
diagnosed with basic orthostatic testing as well; heart rate and blood
pressure are taken in the laying, sitting, and standing position.
Measurements should be taken after 10 minutes of resting/laying, and
immediately, after 2, 5, and 10 minutes of standing (if the patient is
able). </span></span><span class="font_6"></span><span class="font_6"></span><span class="font_6"></span><br />
<span class="font_6"><span class="color_16">Treatment can include a
variety of drug related options, as well as lifestyle changes that help
improve symptoms in some. Again, this will vary greatly from patient to
patient, as the underlying cause of POTS impacts how a patient will
respond. </span></span><br />
<span class="font_6"><span class="color_16">Common lifestyle
adjustments include increasing fluid and sodium intake to help retain
fluids and expand blood volume, wearing compression stockings to prevent
blood pooling, and exercising regularly. De-conditioning greatly
affects POTS in most cases, and keeping as active as possible is
extremely important. </span></span><br />
<span class="font_6"><span class="color_16"><img src="http://media.tumblr.com/tumblr_m98cmcqE161rr4gc4.jpg" /></span></span><br />
<span class="font_6"><br /><span class="bold"><span class="color_11"></span></span></span><b><span class="font_0"><span class="bold"><span class="color_11">Quality of Life & Outlook:</span></span></span></b><span class="font_6"><span class="color_16"><br /></span></span><br />
<a href="http://media.tumblr.com/tumblr_m98cbdDCsq1rr4gc4.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="178" src="http://media.tumblr.com/tumblr_m98cbdDCsq1rr4gc4.jpg" width="200" /></a><span class="font_6"><span class="color_16">POTS patients’ quality of
life can vary greatly, due to many things that cause POTS. It is not
contagious, is not life threatening, and generally improves with time
and treatment adjustments. It can be extremely disabling though, and
frustrating for patients and caregivers to cope with. Symptoms can
change from day to day, and hour to hour, and this makes it difficult
for physicians to treat as well. </span></span><br />
<br />
<span class="font_6"><span class="color_16"></span></span><br />
<span class="font_6"><span class="color_16">Treatment is usually
focused on managing the symptoms and underlying causes, and there is no
cure for POTS per say, since it is a syndrome (and not a disease).</span></span> But if the underlying cause is treated, POTS symptoms may abate.<br />
<span class="font_6"><span class="color_16">Many teens outgrow POTS
or learn to live a highly functional life while managing symptoms. For
others, POTS may go into remission, and flare up again, often with new
and confusing symptoms. For an estimated 25% of the POTS population,
quality of life is compared to those with Congestive Heart Failure or
Chronic Obstructive Pulmonary Disease. This severely limits day to day
activities such as work, school, and other lifestyle issues such as
hygiene and childcare. There have been no long term studies with
concrete numbers regarding the long term outlook for POTS patients.</span></span><br />
<span class="font_6"><span class="color_16"><br />The good news is that
there is exciting research taking place, and many more resources for
patients and families as they adjust to life with POTS. Find links to
many of them on this website, including listings of support groups,
tips and tools for patients, and treatment options.</span></span><br />
<br />
<b><span class="font_0"><span class="color_11"><span class="bold">Sources:</span></span></span></b><span class="font_6"><span class="color_16"><br />1.
The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis
& Management. Raj SR, Indian Pacing Electrophysiology J. 2006
April-Jun; 6(2): 84-99.</span></span><br />
<br />
<span class="font_6"><span class="color_16">2. Medical Dictionary, Medline Plus, U.S. Library of Medical Sciences and National Institutes of Health</span></span><br />
<br />
<span class="font_6"><span class="color_16">3. Consensus statement on
the definition of orthostatic hypotension, neurally mediated syncope
and the postural tachycardia syndrome. Freeman R et al. , Auton
Neurosci. 2011 Apr 26;161(1-2):46-8. Epub 2011 Mar 9.</span></span><br />
<br />
<span class="font_6"><span class="color_16">4. Postural Tachycardia Syndrome. Grubb BP, Circulation. 2008; 117: 2814-2817.</span></span><br />
<br />
<span class="font_6"><span class="color_16">5. Postural tachycardia syndrome (POTS). Low PA, Opfer-Gehrking TL, Textor SC et al.<br />Neurology 1995; 45: S19-S25.</span></span><br />
<br />
<span class="font_6"><span class="color_16">6. Sleep Disturbances and
Diminished Quality of Life in Postural Tachycardia Syndrome. Raj SR.. J
Clin Sleep Med. 2011 April 15; 7(2): 204–210.</span></span><br />
<br />
<span class="font_6"><span class="color_16">7. The Autonomic Dysfunction Consortium, National Institutes of Health Rare Diseases Network</span></span><br />
<br />
<span class="font_6"><span class="color_16">8. A review of postural orthostatic tachycardia syndrome. Carew et al., Europace (2009) 11 (1): 18-25.</span></span><br />
<br />
<span class="font_6"><span class="color_16">9. Postural tachycardia
in children and adolescents: what is abnormal? Singer W, Sletten DM,
Opfer-Gehrking TL, Brands CK, Fischer PR, Low PA, J Pediatr. 2012
Feb;160(2):222-6. Epub 2011 Oct 11.</span></span><br />
<br />
<span class="font_6"><span class="color_16">10. Vanderbilt Autonomic Dysfunction Center</span></span><span class="font_6"></span><br />
<br />
<span class="font_6"><i>Written by Claire Martin of Dysautonomia SOS, email with any questions at claire@dysautonomiaSOS.org.</i></span><br />
<br />
<br />
Here are a few links to great summary articles about Orthostatic Intolerance and POTS. <br />
<div style="color: purple;">
</div>
<h1 style="color: purple;">
</h1>
<ul style="color: purple; font-family: Times,"Times New Roman",serif;">
<li><h1>
<u><span style="font-size: medium;"><b><a href="http://www.blogger.com/goog_2025536998" style="color: purple;">Orthostatic Intolerance (by Dr. Stewart)</a> </b></span></u></h1>
</li>
</ul>
<div style="color: purple; font-family: Times,"Times New Roman",serif;">
<u><span style="font-size: medium;"><b><a href="http://emedicine.medscape.com/article/902155-overview#aw2aab6b2" target="_blank"> </a></b></span></u></div>
<h1 style="color: purple; font-family: Times,"Times New Roman",serif;">
</h1>
<ul style="color: purple; font-family: Times,"Times New Roman",serif;">
<li><h1>
<u><span style="font-size: medium;"><b><a href="http://www.medscape.com/viewarticle/717904_5" target="_blank">Postural Orthostatic Tachycardia Syndrome (POTS): A Diagnostic Dilemma: Discussion</a> </b></span></u></h1>
</li>
</ul>
<ul style="color: purple;">
<li><span style="font-size: medium;"><b><a href="http://www.blogger.com/Your%20Child%20is%20Diagnosed%20with%20a%20Dysautonomia%20Condition:%20A%20Resource%20for%20Immediate%20and%20Extended%20Family%20Awareness%20Series%20www.dynakids.org%20Dysautonomia" target="_blank"><u style="font-family: Times,"Times New Roman",serif;"><span style="color: purple;">Your Child is Diagnosed with a Dysautonomia Condition: A Resource for Immediate and Extended Family (DynaKids)</span></u></a></b></span></li>
</ul>
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Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com2tag:blogger.com,1999:blog-7709891692454052883.post-25703584406396286352012-09-07T16:29:00.000-04:002012-09-07T20:38:01.004-04:00October Is Global Dysautonomia Awareness Month!<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-RiljIk3vees/UEpY4IGCfMI/AAAAAAAABA8/V8qokMR7d-M/s1600/DAMonthFlier.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-RiljIk3vees/UEpY4IGCfMI/AAAAAAAABA8/V8qokMR7d-M/s400/DAMonthFlier.jpg" width="391" /></a></div>
<br />
<br />
<div style="text-align: center;">
<a href="http://www.zazzle.com/global_dysautonomia_awareness_month_2012_shirt-235285927076154405" target="_blank">And of course we now have tee shirts! In men, women, and kids styles:</a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-grrXtalDstg/UEpoMp4q6jI/AAAAAAAABBg/7fgu_aKkn4M/s1600/global_dysautonomia_awareness_month_2012_shirt-r6ef4a80b64ba4f6ca740eb1691c80833_f0cld_512.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-grrXtalDstg/UEpoMp4q6jI/AAAAAAAABBg/7fgu_aKkn4M/s320/global_dysautonomia_awareness_month_2012_shirt-r6ef4a80b64ba4f6ca740eb1691c80833_f0cld_512.jpg" width="320" /></a></div>
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<br />Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com2tag:blogger.com,1999:blog-7709891692454052883.post-46349560718454943592012-09-02T21:43:00.000-04:002012-09-03T11:22:47.700-04:00FIND YOUR POTS CAUSE: Mitochondrial Disease 101 (Guest Post by Hannah!)<!--[if gte mso 9]><xml>
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<a href="http://3.bp.blogspot.com/-G8etf0PAXdQ/UETJm5x3T-I/AAAAAAAAA-w/HLktWvGEb9c/s1600/mito3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-G8etf0PAXdQ/UETJm5x3T-I/AAAAAAAAA-w/HLktWvGEb9c/s1600/mito3.jpg" /></a></div>
<span style="font-size: large;"><b>Global Mito Awareness Week is September 16-22. Mito can cause POTS symptoms, and other types of autonomic dysfunction.</b></span></div>
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<span style="font-size: large;"><i><span style="font-size: small;"><span style="font-family: Verdana;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-family: Times,"Times New Roman",serif;">"Mitochondrial cytopathies are a diverse group of inherited and
acquired disorders that result in inadequate energy production. They
can be caused by inheritable genetic mutations, acquired somatic
mutations, exposure to toxins (including some prescription medications),
and the aging process itself</span>." <span style="font-size: x-small;">(1)</span></span></span></span></span></i><b><span style="font-size: small;"> </span></b></span></div>
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<a href="http://2.bp.blogspot.com/-nFCXSs5LAtw/UETHbbL7ywI/AAAAAAAAA-o/8yfX1JzVnb8/s1600/hannah.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-nFCXSs5LAtw/UETHbbL7ywI/AAAAAAAAA-o/8yfX1JzVnb8/s1600/hannah.jpg" /></a></div>
I'm very excited to have an amazing POTSy teen that I met and have gotten to know a bit through Facebook offer to write about her probable POTS cause, Mitochondrial Disease. Her name is Hannah, and she just started her Freshman year at UNC Chapel Hill. She is one of the most well spoken and knowledgeable teens, let alone people, I have met - especially regarding her health conditions. She is always willing to answer questions and help others navigate a very confusing set of diseases. She developed POTS as a young teen, but then her symptoms changed and became more severe, and she was given a tentative Mito diagnosis after numerous positive tests and working with both Mito and POTS specialists. </div>
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<span style="font-family: Verdana;"><span style="font-size: small;"></span></span></div>
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<span style="font-size: x-large;"><b>MITOCHONDRIAL DISEASE 101</b></span> </div>
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by Hannah </div>
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The mitochondria are the “power-plants” of the cell—they
provide most of the energy a cell needs to function. There are mitochondria in
every single cell except for red blood cells. Mitochondrial disease, or ‘mito’
is a genetic and generally progressive problem with the mitochondria. (There is
also a concept of “mitochondrial dysfunction”, where there is no gene mutation
but the mitochondria don’t work well because of some outside force, such as
certain medications or diseases.) The spectrum of severity of mitochondrial
disease varies widely, from a baby with <a href="http://www.ninds.nih.gov/disorders/leighsdisease/leighsdisease.htm" target="_blank">Leigh’s Disease</a> who passes away before
his first birthday, to the very serious <a href="http://www.ncbi.nlm.nih.gov/books/NBK1179/" target="_blank">MNGIE</a>, to a woman who gets excessively fatigued and weak as she
ages.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-HnGazSEtpV8/UEP06PKQmvI/AAAAAAAAA9A/J1_INr2kGn4/s1600/mito.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="203" src="http://1.bp.blogspot.com/-HnGazSEtpV8/UEP06PKQmvI/AAAAAAAAA9A/J1_INr2kGn4/s320/mito.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cells have multiple mitochondrian that power the cell through by converting <a href="http://www.nature.com/scitable/topicpage/mitochondria-14053590" target="_blank">ADP to ATP</a>.</td></tr>
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The genetics of mito are incredibly complex, but basically
the take-away point is that they’re nothing like what you would expect for a
genetic disease. It can be inherited in any pattern (maternal, autosomal
recessive, autosomal dominant, or a spontaneous mutation - otherwise from Mom, Dad, both, or neither), and the severity and
symptoms aren’t consistent within families. Symptoms can develop at any age, or
people can have a mutation and not exhibit any symptoms.</div>
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Because mitochondria are in so many places, when they don’t
work well a staggering number of symptoms can arise. Any system can be
affected, although the systems that require more energy (brain, GI tract,
muscles) tend to have the most issues.</div>
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Here’s a list of some common symptoms:</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Dysautonomia (malfunction/disease of the autonomic nervous system)</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Seizures</div>
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</span></span></span>Ataxia (a lack of muscle coordination)</div>
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</span></span></span>Muscle weakness or spasticity</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Stroke-like episodes</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Developmental delays or autism</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Ptosis (drooping eye lids)</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Deafness</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Motility issues (problems withe food moving through the digestive tract)</div>
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</span></span></span>Trouble swallowing or aspiration</div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Diabetes </div>
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<span style="background: yellow; mso-highlight: yellow;"></span>“What are the symptoms of Mitochondrial Disease? This is not the question one
should ask. Rather, one should ask, in what situation should we consider
Mitochondrial Disease? This question I can answer: when a child has multiple
symptoms, with multiple organ systems involved, but no unifying answer to it
all, it is time to consider mito.”<a href="http://www.blogger.com/blogger.g?blogID=7709891692454052883#_edn1" name="_ednref1" style="mso-endnote-id: edn1;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS Mincho"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: minor-latin;">[i]</span></span></span></span></a>
Or, as my POTS doctor says, “when I have a patient with POTS and other issues
that are ‘weird’, my mind goes straight to mitochondrial disease.” So, people that have other mystery health issues involving multiple systems should consider adding mito to the list of possible POTS causes.</div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-size: large;">Mito and POTS</span><span style="mso-tab-count: 1;"><span style="font-size: large;"> </span> </span></b></div>
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Autonomic dysfunction is very clearly a part of
mitochondrial disease. Just as any other system can get too little energy, so to
can the autonomic nervous system, causing autonomic neuropathy, a subset of
peripheral neuropathy. The Mayo Clinic estimates that 50% of people with POTS have <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001780/" target="_blank">autonomic neuropathy</a>.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-E6cvX6_IABw/UEP6TiZoSlI/AAAAAAAAA9g/XRhnLVs1Lbo/s1600/mito2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="301" src="http://3.bp.blogspot.com/-E6cvX6_IABw/UEP6TiZoSlI/AAAAAAAAA9g/XRhnLVs1Lbo/s400/mito2.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mitochondria shown in the context of a nerve cell/network.</td></tr>
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<span style="mso-spacerun: yes;"> </span>Here is <a href="http://www.sciencedirect.com/science/article/pii/S0887899405004649" target="_blank">a published study’s</a>
discussion of peripheral neuropathy in mitochondrial disease (by the way, respiratory chain
complex deficiency is just a fancy way of saying mitochondrial disease):</div>
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<span style="background-color: #d9d2e9;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span>“</span><span style="color: #2e2e2e; font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Arial Unicode MS";">… The results of this and previous reports demonstrate that
peripheral neuropathy is a strikingly common and early manifestation of
mitochondrial diseases, regardless of underlying genotype, and suggests that a
common mechanism underlies this complication. The efficient conversion of
substrate fuel (primarily carbohydrate) into energy requires the integrity of
both nuclear and mitochondrial genomes, but this process is perturbed in
patients with loss-of-function mutations in … the respiratory chain complexes<span class="apple-converted-space"> </span>…</span></span></div>
<div class="svarticle" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto auto; line-height: 15pt; margin: 0in 0in 6.75pt; text-align: justify; vertical-align: baseline;">
<span style="background-color: #d9d2e9;"><span style="color: #2e2e2e; font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Arial Unicode MS";">We postulate that cellular energy failure is the most likely
common cause of peripheral neuropathy in patients with… respiratory chain
complex deficiency, regardless of how the neuropathy is manifested clinically
or histologically.<span class="apple-converted-space">”</span><a href="http://www.blogger.com/blogger.g?blogID=7709891692454052883#_edn2" name="_ednref2" style="mso-endnote-id: edn2;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="color: #2e2e2e; font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Arial Unicode MS"; mso-fareast-language: EN-US;">[ii]</span></span></span></span></a></span></span></div>
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<span style="font-size: large;">So basically, the cause of autonomic dysfunction is what we assume it would be—the
nerve cells aren’t getting enough energy.</span></div>
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<span style="font-size: large;"><span style="color: #0b5394;">Faulty Mitochondria--->Faulty Autonomic Nerves---></span></span></div>
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<span style="font-size: large;"><span style="color: #0b5394;">Faulty Autonomic Nervous System--->POTS </span></span></div>
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Autonomic neuropathy in particular seems to be very
prevalent in mito: in a study of 22 patients with mitochondrial disease “ten patients
(46%) had definite autonomic damage… eight patients (36%) showed moderate
alterations… and four patients (18%) had normal autonomic function”.<a href="http://www.blogger.com/blogger.g?blogID=7709891692454052883#_edn3" name="_ednref3" style="mso-endnote-id: edn3;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS Mincho"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: minor-latin;">[iii]</span></span></span></span></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;"><b>So, if mito is a
possibility for someone, how do they get tested?</b></span></div>
<div class="MsoNormal">
Unfortunately, mito testing, in a word, sucks. It’s
complicated and imprecise. So, there are many people out there (myself
included) who have tests pointing to mitochondrial disease, are being treated for
mitochondrial disease, but can’t get that official diagnosis yet. Many doctors
are very hesitant to hand out the diagnosis unless they’re 100% sure, because
mito is very serious.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here are the testing options:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><u>Metabolic labs</u>: a whole lot of bloodwork. This
isn’t enough to provide a diagnosis, but if some of the labs are off it can
point in the direction of mito. If they’re normal, though, mito isn’t ruled
out.<span style="background-color: white;"><span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto auto;"><br /></span></span></div>
<ul>
<li><span style="background-color: white;"><span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto auto;"><span style="background-color: #d9d2e9;"> Examples of some of the tests include: plasma lactate and pyruvate, plasma acylcarnitine analysis, carnitine,
comprehensive metabolic panel, quantitative plasma amino acids, quantitative urine organic acids, and COQ10.</span></span></span></li>
</ul>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
<br /></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><u>Genetic testing</u>: over 1500 genes can cause
mitochondrial disease, and they can currently test most, but not all, of them.
The problem is, the technology has outpaced our knowledge. Many people have
variants found, but they could be disease-causing, or they could just be a
fluke. If the results show a mutation known to cause disease, though, that would
provide a definite diagnosis.</div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"> </span></span></span><u>Muscle biopsy</u>: For years a surgical muscle
biopsy, literally taking a piece of muscle and studying the mitochondria in it,
was how everyone was diagnosed. However, they are being moved away from for a
few reasons:</div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo2; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span>They are a surgery done under anesthesia, which
is unpleasant and carries risks.</div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo2; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span>There are false positives and false negatives. Many hospitals don't do the muscle biopsy properly or preserve it incorrectly,
which totally invalidates it-- in which case it has to be repeated.</div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo2; text-indent: -.25in;">
<span style="font-family: "Courier New"; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7.0pt "Times New Roman";">
</span></span></span>Biopsies only can tell that the mitochondria
aren’t working right, not if it’s the genetically based mitochondrial
disease. A person could have mitochondria damaged by medications or even an
unknown disease process. </div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span> </div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
<u>Buccal swab</u>: New and experimental, this is a
cheek swab that looks at some of the things that the biopsy does. Some doctors
diagnose off of it, some treat it as a clue like the metabolic labs, and some
don’t trust it.</div>
<div class="MsoListParagraphCxSpLast">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-6ARbZb_J0tk/UEQCCHBIo2I/AAAAAAAAA-A/4WqpeVU8PHA/s1600/case0209f1_41644_41647.gif" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="356" src="http://4.bp.blogspot.com/-6ARbZb_J0tk/UEQCCHBIo2I/AAAAAAAAA-A/4WqpeVU8PHA/s400/case0209f1_41644_41647.gif" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A child's mitochondrial mystery case study found <a href="http://www.jaapa.com/what-condition-caused-the-cyclical-decompensation-in-this-child/article/127127/" target="_blank">here</a>.</td></tr>
</tbody></table>
<div class="MsoNormal">
One thing to make clear is that mitochondrial diseases don’t
have to have a name. When scouring the Internet, you may have come across names
like ‘MELAS’ or ‘MERRF’. The old way of thinking was that each mitochondrial
disease had a name and phenotype corresponding to specific mutated genes—but
then, once doctors learned that there are 1500 genes that can cause
mitochondrial disease, they quickly stopped naming them all. Most people do
not have a named disease. Some doctors who are not mito specialists do not know
about this change, though, and will only test for the named types—and if that
happens, switch doctors to be sure you are thoroughly evaluated.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<span style="font-size: large;"><b>What is the treatment
for mito?</b></span></div>
<div class="MsoNormal">
Right now, the main treatment is the “mito cocktail” - a
combination of high doses of vitamins to kick-start the mitochondria. The
cocktail isn’t miraculous, but may improve energy and slow progression. It is
also extremely important to minimize fasting and metabolic stress.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Coming down the pipeline, though, is a drug named <a href="http://www.mitoaction.org/epi743" target="_blank">EPI-743</a>
that is showing great promise in clinical trials. Huge numbers of scientists
are putting their heads together about mitochondrial disease, and big strides
in testing and treatment should come along in the next few years.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>As you can see, mitochondrial disease is complicated—and
I’ve barely scratched the surface.<span style="mso-spacerun: yes;"> </span>I
don’t know everything, but feel free to comment if you have more questions.</b></div>
<div style="mso-element: endnote-list;">
---Hannah<br />
<br />
<hr align="left" size="1" width="33%" />
<hr align="left" size="1" width="33%" />
<div id="edn1" style="mso-element: endnote;">
<div class="MsoEndnoteText">
<span style="font-size: small;"><a href="http://www.blogger.com/blogger.g?blogID=7709891692454052883#_ednref1" name="_edn1" title=""><span class="MsoEndnoteReference"><span class="MsoEndnoteReference"><span style="font-family: "Cambria","serif";">[i]</span></span></span></a><a href="http://www.articles.complexchild.com/00033.html" target="_blank"> <span style="font-family: Times,"Times New Roman",serif;"><span style="font-size: small;">Symptoms of Mito: A Surprisingly Short List</span></span></a></span></div>
</div>
<div id="edn2" style="mso-element: endnote;">
<div class="MsoEndnoteText">
<span style="font-size: small;"><a href="http://www.blogger.com/blogger.g?blogID=7709891692454052883#_ednref2" name="_edn2" title=""><span class="MsoEndnoteReference"><span class="MsoEndnoteReference"><span style="font-family: "Cambria","serif";">[ii]</span></span></span></a></span><span style="font-size: small;"><a href="http://www.sciencedirect.com/science/article/pii/S0887899405004649" target="_blank"> Peripheral Neuropathy in Genetic Mitochondrial Diseases</a>, Volume 34, Issue 2, February 2006, Pages 127–131.</span></div>
<div class="MsoEndnoteText">
<a href="http://www.blogger.com/blogger.g?blogID=7709891692454052883#_ednref3" name="_edn3" style="mso-endnote-id: edn3;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "Cambria","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS Mincho"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: minor-latin;">[iii]</span></span></span></span></a> <a href="http://www.springerlink.com/content/l980178403875101/" title="Link to Article">Evidence of cardiovascular autonomic impairment in mitochondrial disorders</a>, Journal of Neurology, Volume 254, Number 11 (2007), <span class="pagination">1498-1503.</span><span class="doi"></span></div>
<div class="MsoEndnoteText">
<br />
<br /></div>
<span style="font-size: large;"><b>Other Sources/Resources:</b></span></div>
<div id="edn3" style="mso-element: endnote;">
<div class="MsoEndnoteText">
<i>1. </i><a href="http://www.ccjm.org/content/68/7/625.full.pdf+html" target="_blank"><i>Mitochondrial cytopathy in adults: What we know so far. </i></a><cite><abbr class="slug-jnl-abbrev" title="Cleveland Clinic Journal of Medicine">Cleveland Clinic Journal of Medicine</abbr><span class="slug-pub-date" itemprop="datePublished">
July 2001
</span>
<span class="slug-vol">
vol. 68
</span><span class="slug-issue">
7
</span><span class="slug-pages">
625-626 </span></cite></div>
<div class="MsoEndnoteText">
<cite><span class="slug-pages"><span style="color: purple;">2. <a href="http://www.ncbi.nlm.nih.gov/pubmed?term=mitochondrial%20disease%20and%20postural%20orthostatic%20tachycardia" target="_blank">Autonomic dysfunction presenting as <span class="highlight">orthostatic</span> intolerance in patients suffering from <span class="highlight">mitochondrial</span> cytopathy</a>.</span>Grubb BP et al., <cite><span class="slug-pages">Clin Cardiol. 2010 Oct;33(10):626-9. </span></cite></span></cite></div>
<div class="MsoEndnoteText">
<cite><span class="slug-pages"><cite><span class="slug-pages">3. MitoAction.org:</span></cite></span></cite><span style="font-size: small;"><span style="font-weight: normal;"><i> <a href="http://www.mitoaction.org/blog/dysautonomia-body-temperature" target="_blank">Dysautonomia: Body temperature, heart rate, and more</a></i></span></span></div>
<div class="MsoEndnoteText">
<span style="font-size: small;"><span style="font-weight: normal;"><i>4. <a href="http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_Disease.htm" target="_blank">United MItochondrial Disease Foundation (LOADS OF INFO)</a></i></span></span></div>
<div class="MsoEndnoteText">
<span style="font-size: small;"><span style="font-weight: normal;"><i>5. <a href="http://curemito.org/" target="_blank">Cure Mito</a> </i></span></span></div>
<div class="MsoEndnoteText">
<span style="font-size: small;"><span style="font-weight: normal;"><i>6. Other Support:</i></span></span></div>
<ul>
<li style="margin-top: 1ex;"><a href="http://ghr.nlm.nih.gov/exit?to=www.cmdn.org.uk&vje=7bH4sIAAAAAAAAAEvOz0vJLMnMz4sPSCzJTM0rUSguLSjILyqJd0wpy09OTK7UDYYKeNZklJQUWOnrl5eX6yXnpuTp5Rel65Vm6wMAIx2ECEQAAAA_">Children's Mitochondrial Disease Network <nobr>(UK)<img alt="This link leads to a site outside Genetics Home Reference." border="0" class="offSiteImage" height="7" hspace="0" src="http://ghr.nlm.nih.gov/html/images/offsiteico.gif" title="This link leads to a site outside Genetics Home Reference." vspace="0" width="15" /></nobr></a></li>
<li style="margin-top: 1ex;"><a href="http://ghr.nlm.nih.gov/exit?to=www.familyvillage.wisc.edu&vje=7bH4sIAAAAAAAAAC3IMQ6AIAwAwK.4Acvu5uhm4gMIAkoToEQKDYmPd.HGs5QdMlLWu2H0mafaSqGH9eo6WWPHfPyxvYG5LEqJCFwmYRwdYzS3B8FqwbumIp46IRMETh-d1aDsWwAAAA__">Family Village: Mitochondrial <nobr>Disorders<img alt="This link leads to a site outside Genetics Home Reference." border="0" class="offSiteImage" height="7" hspace="0" src="http://ghr.nlm.nih.gov/html/images/offsiteico.gif" title="This link leads to a site outside Genetics Home Reference." vspace="0" width="15" /></nobr></a></li>
<li style="margin-top: 1ex;"><a href="http://ghr.nlm.nih.gov/exit.pdf?to=www.mda.org&vje=7bH4sIAAAAAAAAAEvOz0vJLMnMz4sPSCzJTM0rUSguLSjILyqJd0wpy09OTK7UDYYKeNZklJQUWOnrl5eX6-WmJOrlF6XrF5Qm5WQmJ4JMKNYPcHEr1ndz1PX1DPHXK0hJAwAPYXuYXQAAAA__">Muscular Dystrophy Association: Facts About Mitochondrial <nobr>Myopathies<img alt="P D F file" border="0" class="pdfImage" height="16" hspace="0" src="http://ghr.nlm.nih.gov/html/images/acrobat_icon.gif" vspace="0" width="17" /><img alt="This link leads to a site outside Genetics Home Reference." border="0" class="offSiteImage" height="7" hspace="0" src="http://ghr.nlm.nih.gov/html/images/offsiteico.gif" title="This link leads to a site outside Genetics Home Reference." vspace="0" width="15" /></nobr></a></li>
<li style="margin-top: 1ex;"><a href="http://ghr.nlm.nih.gov/exit?to=www.kumc.edu&vje=7bH4sIAAAAAAAAAEvOz0vJLMnMz4sPSCzJTM0rUSguLSjILyqJd0wpy09OTK7UDYYKeNZklJQUWOnrl5eX62WX5ibrpaaU6qenJutDtejnZpbkJ2fk5-lllOTmAABlr.slWgAAAA__">Resource list from the University of Kansas Medical <nobr>Center<img alt="This link leads to a site outside Genetics Home Reference." border="0" class="offSiteImage" height="7" hspace="0" src="http://ghr.nlm.nih.gov/html/images/offsiteico.gif" title="This link leads to a site outside Genetics Home Reference." vspace="0" width="15" /></nobr></a></li>
<li style="margin-top: 1ex;"><a href="http://ghr.nlm.nih.gov/exit?to=www.umdf.org&vje=7bH4sIAAAAAAAAAEvOz0vJLMnMz4sPSCzJTM0rUSguLSjILyqJd0wpy09OTK7UDYYKeNZklJQUWOnrl5eX65XmpqTp5Rel6xdnlqTqJ-tZFHr7exn4lrmZ-4S66yfpmVsaWZqZG-pn6zm5uBnoe-TnpupllOQCAMTgZNBvAAAA">United Mitochondrial Disease <nobr>Foundation<img alt="This link leads to a site outside Genetics Home Reference." border="0" class="offSiteImage" height="7" hspace="0" src="http://ghr.nlm.nih.gov/html/images/offsiteico.gif" title="This link leads to a site outside Genetics Home Reference." vspace="0" width="15" /></nobr></a></li>
</ul>
<div class="MsoEndnoteText">
<span style="font-size: small;"><span style="font-weight: normal;"><i> </i></span></span></div>
<div class="MsoEndnoteText">
<br /></div>
<div class="MsoNormal">
<b><span style="font-size: large;"><span style="font-family: Times,"Times New Roman",serif;">One
other quick note - while reading up on Mito, I (Claire) learned that it turns out Mito is now implicated in more and more diseases and
conditions, so being aware of the symptoms and signs becomes especially important if you suffer from any of these as well as POTS or autonomic dysfunction in general (from UMDF): </span></span></b></div>
<ul>
<li><span style="font-family: Times,"Times New Roman",serif;"><span style="font-size: small;">Alzheimer’s Dementia, Parkinson’s disease,
Huntington Disease, Amyotrophic Lateral Sclerosis (ALS), mental
retardation, deafness and blindness, diabetes, obesity, cardiovascular
disease and stroke. Over 50 million people in the US suffer from these
chronic degenerative disorders. While it cannot yet be said that
mitochondrial defects cause these problems, it is clear that
mitochondria are involved because their function is measurably
disturbed.</span></span></li>
<li><span style="font-family: Times,"Times New Roman",serif;"><span style="font-size: small;">Even autoimmune diseases such as multiple
sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to
have a mitochondrial basis to illness.
</span></span></li>
<li><span style="font-family: Times,"Times New Roman",serif;"><span style="font-size: small;">Mitochondrial dysfunction has been associated
with a wide range of solid tumors, proposed to be central to the aging
process, and found to be a common factor in the toxicity of a variety of
physical and chemical agents.</span></span></li>
<li>Cancers are also associated with defects in the
mitochondria. Within the cell, signaling must occur between the
mitochondria and the nucleus. When the signaling malfunctions, the
defect can cause cancer.
</li>
<li>Researchers discovered that mutations in the
mitochondrial DNA may play a role in tumor metastasis and suggests a
possible new avenue for the development of a treatment to suppress
metastasis.
</li>
<li>Researchers have found a very consistent decline in mitochondrial function that is found in diabetes and pre-diabetes.
</li>
<li>There is increasing interest in the possibility
that mitochondrial dysfunction might play an important role in the
etiology of autism. A subset of autistic children have already been
shown to manifest biochemical alterations that are commonly associated
with mitochondrial disorders, and a few have been linked to specific
alterations in the mitochondrial genes. (4)</li>
</ul>
<div class="MsoEndnoteText">
<span style="font-size: small;"><span style="font-weight: normal;"><b><span style="font-size: large;">Also - as a former biology teacher/researcher, I was having flashbacks to cell biology (<a href="http://en.wikipedia.org/wiki/Citric_acid_cycle" target="_blank">the citric acid/Krebs cycles</a>) while researching and reading about Mito. If you are interested in the processes in detail and some cool facts check out <a href="http://www.nature.com/scitable/topicpage/mitochondria-14053590" target="_blank">this site</a>. Mitochondria are actually quite unique and interesting organelle's, and insanely important in many ways. </span></b></span></span></div>
<div class="MsoEndnoteText">
<span style="font-size: small;"><span style="font-weight: normal;"><i><b><br /></b></i></span></span></div>
<div class="MsoEndnoteText">
<br /></div>
<div class="MsoEndnoteText">
<span style="font-size: small;"><span style="font-weight: normal;"><i><b>Thanks again to Hannah for contributing such a great article!</b> </i></span></span></div>
<div class="MsoEndnoteText">
<cite><span class="slug-pages"><cite><span class="slug-pages"></span></cite></span></cite> </div>
</div>
</div>
Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com3tag:blogger.com,1999:blog-7709891692454052883.post-82966600418489065372012-08-26T20:29:00.000-04:002012-08-28T10:02:34.812-04:00Hydration, Salt, and Peeing: The Renin-Angiotensin-Aldosterone SystemI guess I should use the technical name for peeing in this title - urination - but it's a catchier to say pee. Because that's what many of us POTS folks do (and various other forms of Dysautonomia), we pee A LOT.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-1cinvUn-EQI/UDpsBkrSy0I/AAAAAAAAA5U/MqrvyC0fO9U/s1600/SALT.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="http://3.bp.blogspot.com/-1cinvUn-EQI/UDpsBkrSy0I/AAAAAAAAA5U/MqrvyC0fO9U/s320/SALT.jpg" width="320" /></a></div>
<span style="font-size: large;">Why is this? And why the heck do we have to eat so much salt? </span><br />
<br />
<span style="font-size: small;">Well, there is this thing called the </span><br />
<h1>
Renin-Angiotensin-Aldosterone System.</h1>
<h1>
<span style="font-size: small; font-weight: normal;"> </span></h1>
<h1>
<span style="font-size: small; font-weight: normal;">It's a big deal. It takes place mainly in your kidneys and adrenal cortex, and affects your blood pressure directly. Lets break down the three components:</span></h1>
<h1>
<span style="font-size: small; font-weight: normal;"> </span></h1>
<span style="font-size: small; font-weight: normal;">1. </span><span style="font-size: small;"><b>Renin</b> is a protein (enzyme) released by special kidney cells when you have decreased salt (sodium levels) or low blood volume</span><span style="font-size: small;"><span style="font-weight: normal;">, and stimulates the
formation of <i>Angiotensin</i> in blood and tissues. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-weight: normal;">2. <b>Angiotensin</b> then undergoes a series of reactions that convert it to <b>Angiotensin II (AII in the diagram below)</b>, which </span></span> <span style="font-size: small;"><span style="font-weight: normal;">in turn stimulates the
release of <i>Aldosterone</i> from the adrenal cortex. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-weight: normal;">3. <b>Aldosterone</b> is </span></span>the main <a href="http://medical-dictionary.thefreedictionary.com/mineralocorticoid" target="_blank"><span style="font-variant: small-caps;">mineralocorticoid</span></a>
(steroid hormones that balance electrolytes) hormone secreted by the adrenal cortex, the principal biological
activity of which is the regulation of electrolyte and water balance by
promoting the retention of sodium (and, therefore, of water) and the
excretion of potassium. In plain English - Aldosterone helps your kidneys retain salt, and therefor retain fluids, helping to keep blood volume and blood pressure up. <br />
<br />
Here is a diagram of the entire system. <br />
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<a href="http://3.bp.blogspot.com/-x_OMRQ-BMzI/UDpp9NWLxXI/AAAAAAAAA5E/939edONoOXk/s1600/BP015_RAAS.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="313" src="http://3.bp.blogspot.com/-x_OMRQ-BMzI/UDpp9NWLxXI/AAAAAAAAA5E/939edONoOXk/s400/BP015_RAAS.gif" width="400" /></a></div>
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<ul>
<li><span style="font-size: large;"> If you follow the chain of events, you'll see that the production of RENIN is triggered by 3 things: </span></li>
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<span style="font-size: small;">1. Sympathetic Stimulation- that is your Sympathetic Nervous System being kicked into gear (and many of us are super sensitive and this is triggered easily)</span></div>
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<span style="font-size: small;"> </span><span style="font-size: small;"> </span></div>
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<span style="font-size: small;">2. Hypotension- LOW blood pressure (caused by systemic, or whole body, hypotension or <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001253/" target="_blank">renal artery stenosi</a>) </span></div>
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<span style="font-size: small;">3. Decreased Sodium Delivery (to the distal, or the end/faraway, tubules of the kidney)</span></div>
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<ul>
<li><span style="font-size: large;"> The Renin then stimulates Angiotensin, which then stimulates Angiotensin II.</span></li>
</ul>
<ul>
<li><span style="font-size: large;"> Angiotensin II (AII) then has a bunch of important roles that have an impact of POTS/Dysautonomia:</span></li>
</ul>
<span style="font-size: large;"> </span>
<br />
<ol>
<li>Constricts resistance vessels, thereby
increasing systemic vascular resistance and arterial pressure (aka VASOCONSTRICTION - squeezing of your veins to circulate blood. If this is not happening, blood is not being squeezed into the right places properly, and could cause pooling).<br />
<a href="http://2.bp.blogspot.com/-QnYEnbONPLI/UDq9ujjqprI/AAAAAAAAA60/JEHdEbDwD3I/s1600/kidney2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://2.bp.blogspot.com/-QnYEnbONPLI/UDq9ujjqprI/AAAAAAAAA60/JEHdEbDwD3I/s200/kidney2.jpg" width="195" /></a></li>
<li>Acts on the adrenal cortex to release
aldosterone, which
in turn acts on the kidneys to increase sodium and fluid retention (discussed this above).<br />
</li>
<li>Stimulates the release of <u>vasopressin</u>
(antidiuretic hormone, ADH) from the posterior pituitary, which increases fluid retention
by the kidneys (Some people take DDAVP, which is the synthetic form of ADH, to help retain fluids and salt).</li>
<li> Stimulates thirst
centers within the brain (anyone thirsty much??? That's possibly because many of us have too much Angiotensin II).<br />
<br />
</li>
<li>Facilitates
norepinephrine (a type of adrenaline) release from sympathetic nerve
endings and inhibits norepinephrine re-uptake by nerve endings (prevents it from being reabsorbed), thereby enhancing
sympathetic adrenergic function (again - helps keep your veins squeezing to circulate blood, and keeps levels of adrenalin normal in your system. So too much Angiotensin II may INCREASE norepinepherine, which the hyperPOTS group, and many POTS people in general have higher levels of).</li>
</ol>
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HOW THIS RELATES TO POTS/DYSAUTONOMIA:<br />
<br />
Researchers have found what is termed a <i>paradox</i> in POTS patients. Studies have shown that some patients with POTS have high levels of AII despite low
levels of Renin, and also have low levels of Aldosterone. This is the opposite of what should happen (shocker!), and is explained in the diagram below from <a href="http://www.ncbi.nlm.nih.gov/pubmed/21266211" target="_blank">this publication</a> out of Vanderbilt. Common sense would say that increased AII would mean increased Aldosterone, but this is not the case found in quite a few studies of POTS patients. <br />
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<a class="inline_block ts_canvas" href="http://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=3050076_nihms271293f2.jpg" target="tileshopwindow"><img alt="An external file that holds a picture, illustration, etc.
Object name is nihms271293f2.jpg Object name is nihms271293f2.jpg" class="tileshop" height="364" src="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/bin/nihms271293f2.jpg" title="Click on image to zoom" width="400" /></a><br />
<div class="caption">
<div id="__p2">
Schematic
diagram of the renin-angiotensin-aldosterone (RAAS) system profile in
healthy individuals (TOP) and the proposed RAAS profile in patients with
POTS (Bottom). Vertical arrows indicate up- or down-regulation of RAAS
components. Patients with POTS have high levels of Ang II despite low
levels of PRA. The high Ang II might be due to low ACE2 activity with
decreased clearance. Despite the high Ang II levels, however, this
aldosterone levels are low in the patients with POTS. AGT =
angiotensinogen; PRA = plasma renin activity; ACE = angiotensin
converting enzyme; ACE2 = angiotensin converting enzyme 2; Ang =
angiotensin; AT1R = angiotensin receptor type 1.</div>
</div>
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<b><span style="font-size: large;">Summary/Discussion: </span></b><br />
<br />
In some patients, the Renin-Angiotensin-Aldosterone System (RAAS) is wacky. It does the opposite (it's paradoxical) of what it should, and therefor patients do not retain fluids. With increased AII, you would think Aldosterone would increase. And actually, with lower Renin levels, you would expect LOWER Angiotensin. But instead, research has shown the opposite. Hence the paradox. Yay for POTS bodies doing the opposite of what they should!<br />
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Aldosterone specifically helps retain salt, which helps retain fluids. Patients that are not retaining salt and fluids will pee a lot. They sometimes have a low blood volume as well, called HYPOVOLEMIA. Increasing salt helps retain fluids that are taken in by mouth, and therefor increases blood volume. Florinef is the synthetic form of Aldosterone, which is why it is
sometimes the first treatment attempted by many doctors for POTS
patients, and even for <a href="http://stoppotsvirginia.blogspot.com/2012/05/fainting-final-frontier-and-neurally.html" target="_blank">NCS/NMS</a> and other types of Dysautonomia involving low blood pressure and suspected low blood volume.<br />
<br />
This is also why IV fluids work wonders for many. In studies by Mayo and Vanderbilt researchers, they have found that POTS patients average a 13% - 17% volume deficit. For some reason, drinking fluids and loading up with salt orally doesn't work as well with many, and IV fluids bypass the absorption process in the GI tract and boost blood volume directly - with the added bonus of providing salt as well.<br />
<br />
There is some exciting research going on in this field that hopefully will lead to new medications that target abnormalities in both Angiotensin II (POTS patients seem to have too much of this) and Nitric Oxide (NO) deficiencies. Check out Dr. Julian Stewart's work (link below) for more info. He has an excellent classification system for POTS based on volume and "flow." <br />
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That's it for today people!<br />
--Claire<br />
<br />
<i>For your viewing pleasure - here's what I found when I Googled "Toilet" in honor of frequent POTS peeing:</i><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-PccwnnjUL2w/UDq572SOtSI/AAAAAAAAA50/KlAUG5_zM88/s1600/toilet1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="281" src="http://2.bp.blogspot.com/-PccwnnjUL2w/UDq572SOtSI/AAAAAAAAA50/KlAUG5_zM88/s320/toilet1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Portable space toilet. Kinda cool.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-Cpv_NrQidhk/UDq59PDOqhI/AAAAAAAAA58/SedOO647uwk/s1600/toilet2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://4.bp.blogspot.com/-Cpv_NrQidhk/UDq59PDOqhI/AAAAAAAAA58/SedOO647uwk/s320/toilet2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Obviously the men's room.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-Vly4bFmTQm0/UDq5-JMcJ0I/AAAAAAAAA6E/QrP1b0CPZ20/s1600/toilet3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-Vly4bFmTQm0/UDq5-JMcJ0I/AAAAAAAAA6E/QrP1b0CPZ20/s1600/toilet3.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">CREEPY.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-somvhzZrB1o/UDq5-wWJv8I/AAAAAAAAA6M/kgvaZc1zZD0/s1600/toilet4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-somvhzZrB1o/UDq5-wWJv8I/AAAAAAAAA6M/kgvaZc1zZD0/s1600/toilet4.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Distinguished.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-BCLbDyoOZ8o/UDq5_2gIiWI/AAAAAAAAA6U/e4flx1vyuLE/s1600/toilet5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-BCLbDyoOZ8o/UDq5_2gIiWI/AAAAAAAAA6U/e4flx1vyuLE/s1600/toilet5.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">????</td></tr>
</tbody></table>
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<br />
Sourced from an excellent physiology site found <a href="http://www.cvphysiology.com/Blood%20Pressure/BP015.htm" target="_blank">here</a> if you are interested in the more technical terms and break down, and other sources below...<br />
<br />
<ul>
<li style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/21266211" target="_blank">Abnormalities of angiotensin regulation in <span class="highlight">postural</span> <span class="highlight">tachycardia</span> syndrome.</a></span> </li>
<li style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><a href="http://www.nymc.edu/fhp/centers/syncope/index.htm" target="_blank">Center for Hypotension, NY College of Medicine (Dr. Julian Stewart)</a></span></li>
<li style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><a href="http://www.nlm.nih.gov/medlineplus/ency/article/003698.htm" target="_blank">NIH Medline Plus Medical Dictionary</a></span><span style="font-size: small;"> </span></li>
<li><div id="article-title-1" itemprop="headline" style="font-family: Arial,Helvetica,sans-serif;">
<span style="font-size: small;"><a href="http://circ.ahajournals.org/content/111/13/1574.full" target="_blank">Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome</a></span></div>
<div id="article-title-1" itemprop="headline" style="font-family: Arial,Helvetica,sans-serif;">
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<div id="article-title-1" itemprop="headline">
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</li>
</ul>
Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com5tag:blogger.com,1999:blog-7709891692454052883.post-17753465075030968752012-08-04T22:03:00.001-04:002012-08-04T22:11:48.856-04:00Choose to be Chronically VISIBLEAlrighty. Time for an Op-ed. It may tick some people off. <br />
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<a href="http://3.bp.blogspot.com/-31Uj_IBoiJY/UB3UUKfZVnI/AAAAAAAAA3Y/0QsUInctS2k/s1600/images2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-31Uj_IBoiJY/UB3UUKfZVnI/AAAAAAAAA3Y/0QsUInctS2k/s1600/images2.jpg" /></a></div>
I see much posting going on regarding <i>INVISIBLE ILLNESS</i> and spreading awareness by promoting the idea of an illness being invisible. This term has always bothered me, as I have mentioned before on this blog. It has the ring of victim/helplessness to me, and I tend to like things that are assertive, proponents for change, and action oriented.<br />
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<i><b><span style="font-size: large;">I think the problem here is two fold:</span></b></i><br />
1. There is no invisible illness, JUST IGNORANCE. What illness is truly visible? There are very few compared to vast majority of illnesses, diseases, and conditions that people suffer in silence and try to hide - or that do not cause them to look deformed or like the traditional notion of "ill." And that traditional notion of illness is what needs to change. By continuing to use the term invisible illness, we are separating ourselves from other people that "look sick," and in my opinion, making the problem worse. <br />
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2. People find their identity in the "invisible illness" movement, and use it as something to hide behind. NOT EVERYONE. I know that is probably not most people's conscious intention. Many are looking to find a way to spread awareness, which I commend. But is this how any of us want to be known? As invisible? Is this the best way to spread awareness? <br />
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What society sees are deformities and stereotypes. Not illness. They see something out of the ordinary and recognize something is "not right" with that person. This actually has nothing to do with if they are "ill" in some cases. Is an amputee ill? Maybe. Or maybe they are missing a leg, but otherwise are perfectly healthy, and do triathlons. This is a problem with society, not with those of us who are chronically ill, and we need to address those stereotypes if anything is going to change. We need to speak about our conditions by NAMING THEM, and being <span style="font-size: large;"><b>visible</b></span>, not promoting an image that quite frankly can be a bit whiny sounding at times.<br />
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When I go to the doctor - which by the way is the only time I get to leave the house because my health is not the greatest right now - I am on a stretcher. I am strapped into a freaking stretcher, accompanied by paramedics. That's how I roll. And I STILL get questioning looks, people staring. I can see it in their expressions - what is wrong with her? The medical professionals all exclaim that I look great, I am waaaaay to perky to be sick, and they ask what is wrong. THEN I SCHOOL THEM. Literally. And in a good way.<br />
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I love it when people ask me what is wrong, or tell me I look great. I do look great dammit - considering what I have been through, so that is not an insult at all. And it gives me a chance to explain and educate them in simple terms that I am indeed very sick, my nervous system is broken, and I pass out when I am upright very quickly. It causes me to feel like I have run a marathon by the simple act of rolling over, or just sitting up. No more detail is needed, unless I am looking for some sympathy. On some days I need some sympathy - no shame in that - and will launch into more detail about how I constantly feel like I have the flu, my heart pounds, I have to lay flat for hours, showering puts me down for days, etc.... They then say, "Oh! That sounds terrible, I never would have known!" And I smile and hope that they have learned something about Dysautonomia and maybe will now Google it, because the young (younger-ish -sorta kind of young, humor me here) chick on the stretcher was in the office today, and she has Dysautonomia.<br />
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My point is - I AM ON A FREAKING STRETCHER! And I still don't look "sick enough" for most people to recognize that something is wrong. And they are curious, mostly kind, and just want to know. And they want to know why I still smile and joke, and am generally a silly goofy person. I ask them point blank - what is the alternative? Should I be depressed? This is where I am at, I have my sad days, but I am grateful for what I have most of the time and am trying to make the most of it.<br />
<br />
So - what is so wrong with someone asking why? I actually do the same thing. I see a younger, or older, pretty or handsome person and assume they are healthy. If they have rosy cheeks, look fairly "well" and are standing upright, why would I think they are ill? How else would I know? How else would you know? Because that is what society has taught us. That beauty, symmetry, no deformities, and young-ish-ness equal health. Only really really old people, people that look like they are obviously dying (including children), and people with obvious physical deformities are "sick looking" from the outside. <br />
<br />
So how to we address those stereotypes? How do we, the chronically ill, that suffer in silence many times, become visible?<br />
<br />
<span style="font-size: large;">We educate, share, and make people aware of what is wrong with our health. We talk openly about what our illness looks like. And we do it in a way that non-sick people can understand.</span><br />
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<b>We NAME OUR ILLNESS. We choose to VISIBLE. </b><br />
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We come up with ways to notify people that something is wrong with us, if we want them to know (not everyone is comfortable with the world knowing what is wrong with them, and that is perfectly fine! Just don't complain that no one knows you are sick or understands if you are trying to hide it - people are not in general psychic!). This is why I like the <a href="http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf" target="_blank">spoon theory </a>- it is an easy to understand, relate-able way to explain the lack of energy with chronic illness to those who don't have a chronic illness. There are tools like that out there for just about every chronic illness situation. <br />
<br />
<i><span style="font-size: large;"><b>Stereotypes</b></span></i><br />
For instance, lets check out some random pictures I pulled off the web. I have no idea what is wrong with these people, they came from Google images, after I typed in "sick people":<br />
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<a href="http://4.bp.blogspot.com/-et0CRVaB5eg/UBr58hDZpyI/AAAAAAAAA1k/VAWRUKzzeIE/s1600/cancer.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="209" src="http://4.bp.blogspot.com/-et0CRVaB5eg/UBr58hDZpyI/AAAAAAAAA1k/VAWRUKzzeIE/s320/cancer.jpg" width="320" /></a></div>
This poor woman looks very sick. Actually she looks likes she is dying, which she may be. Based on her lack of hair, we assume she has cancer, or maybe brain surgery, but don't know. But we know she is sick. I hope she is ok, which is a lame thing to write, but I really do. I have heard people compare POTS to cancer, or say they wish they had cancer because then they would have treatment options, and I DO NOT. I am thankful every day that I will live, and that I don't have cancer. Do you really want this? Do you want your illness to be killing you to the point that it is this obvious? Some of us have life threatening progressive diseases, and someday may unfortunately end up like this, but should enjoy every minute we are not and be thankful for it. <br />
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<a href="http://3.bp.blogspot.com/-zbpVGtd6foM/UB2yzOonVJI/AAAAAAAAA2A/1sXwe2LfZ-8/s1600/amputee.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://3.bp.blogspot.com/-zbpVGtd6foM/UB2yzOonVJI/AAAAAAAAA2A/1sXwe2LfZ-8/s200/amputee.jpg" width="200" /></a></div>
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This pretty lady is missing an arm. She may have other stuff wrong with her, I don't know. But if you saw her, you know that she has "earned" her handicap parking spot, and something obviously happened to her. But is she sick? On a daily basis? In pain? We have no clue. <br />
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<a href="http://2.bp.blogspot.com/-LU0b3hju9Dg/UB2zZFerviI/AAAAAAAAA2I/RPRoT-QE_2Y/s1600/dialysis.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://2.bp.blogspot.com/-LU0b3hju9Dg/UB2zZFerviI/AAAAAAAAA2I/RPRoT-QE_2Y/s200/dialysis.jpg" width="200" /></a></div>
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This man is hooked up to a dialysis machine. That means his kidney's are failing, and he may be dying. This picture struck me, because if I saw him rockin his mullet out and about at the grocery store, I'd have no clue that he spent part of his days fighting for his life. Did he get a transplant and is ok now? I hope so.<br />
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<a href="http://3.bp.blogspot.com/-UXrWGbwasys/UB20CrF5MDI/AAAAAAAAA2Y/tTM-yh4pAyA/s1600/SH.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-UXrWGbwasys/UB20CrF5MDI/AAAAAAAAA2Y/tTM-yh4pAyA/s1600/SH.jpg" /></a></div>
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We hopefully all know who this is. In case you did not know, this is <a href="http://en.wikipedia.org/wiki/Stephen_Hawking" target="_blank">Stephen Hawking</a>, the famous physicist, who continues to work through a motor neurone disease related to <a href="http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis" title="Amyotrophic lateral sclerosis">amyotrophic lateral sclerosis</a>, a condition that has progressed over the years. He is now almost completely paralyzed and communicates through a speech generating device. He is obviously very ill.<br />
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<a href="http://2.bp.blogspot.com/-UxH6tC3OReY/UB25FPXL8tI/AAAAAAAAA24/lZSXWK1p82g/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-UxH6tC3OReY/UB25FPXL8tI/AAAAAAAAA24/lZSXWK1p82g/s1600/images.jpg" /></a></div>
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I think this girl may have Masto or Lupus, but I'm not sure. She has something obviously wrong with her face. Do you envy her? I ask this, because so many complain about people "pestering" them about not looking sick. This looks painful to me, and I do not envy her. I am grateful that I have to answer questions, and not deal with this skin condition. Especially if it is severe Masto or Lupus, neither are fun.<br />
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<a href="http://4.bp.blogspot.com/-puxGVCCNiVs/UB20A3S_ssI/AAAAAAAAA2Q/ndDbsuO8eW4/s1600/parapelegic.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://4.bp.blogspot.com/-puxGVCCNiVs/UB20A3S_ssI/AAAAAAAAA2Q/ndDbsuO8eW4/s200/parapelegic.jpg" width="133" /></a></div>
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Last one. This guy is actually pretty good looking. He's in a wheel chair. There are lots of really good looking people in a wheel chair, or missing limbs, or with minor deformities. Are they "visibly" sick? Do they deserve a handicap parking spot more than us "invisibly sick" folks? Nope.<br />
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We really are very superficial in this country, and in others as well I'm sure. We are judging people based on their outsides, and being judged as well. But is it really insulting and so terrible to "not loook sick" ???? Nope. Most people don't mean any harm by it, they just don't know. And my point is - none of us do.<br />
<br />
Again, I commend people trying to advocate for awareness. But I feel its time to start taking some responsibility and educating the public and our loved ones. I know many people deal with insensitive family and friends who don't understand. Well, show them the spoon theory. Play the wonderful video by DINET called Changes about POTS. Explain to them in terms they will understand, like having the flu, running up stairs, and other situations that people can relate to. Because we all know that until you have really experienced it, you have no idea what it really FEELS like. I have no clue what it's like to have cancer, or not be able to feel my legs, I don't pretend to. If doing those things does not improve how someone views you and treats you, then chances are they wouldn't be very supportive if you were visibly sick either.<br />
<br />
And if you are tired of people staring when you park in the handicap spot, take the time to explain to them whats wrong. Start telling people. Volunteer to work with a charity and promote awareness for your condition. Do something proactive.<br />
<br />
<span style="font-size: large;"><i><b>SPEAK UP AND BECOME VISIBLE.</b></i></span><br />
We joked about creating a sign that we could wear to explain what is wrong. Well - I have a few solutions. This blog post inspired these, and some will be in the Dysautonomia SOS awareness shop. They are silly (of course), but may spark conversation and allow for you to explain a little easier why you are laying on the floor of a store taking a break from shopping. <br />
<br />
1. The giant tote you can carry while getting out of your vehicle:<br />
<br />
<div style="line-height: 150%; text-align: center;">
<a href="http://www.zazzle.com/ask_me_why_i_park_here_bag-149873118246708785?gl=DysautonomiaSOS&rf=238837801116539106"> <img alt="Ask Me Why I Park Here Bag" src="http://rlv.zcache.com/ask_me_why_i_park_here_bag-p149873118246708785en84x_325.jpg" style="border: 0;" /> </a> <br />
<a href="http://www.zazzle.com/ask_me_why_i_park_here_bag-149873118246708785?gl=DysautonomiaSOS&rf=238837801116539106">Ask Me Why I Park Here Bag</a> by <a href="http://www.zazzle.com/dysautonomiasos*">DysautonomiaSOS</a> <br />
<br />
<br />
<div style="text-align: left;">
2. Embrace your Dysautonomia Diva (I make sick look good): </div>
<div style="text-align: left;">
<br /></div>
</div>
<br />
<div style="line-height: 150%; text-align: center;">
<a href="http://www.zazzle.com/dysautonomia_diva_shirt-235196598850949510?rf=238837801116539106"> <img alt="Dysautonomia Diva Shirt" src="http://rlv.zcache.com/dysautonomia_diva_shirt-re41d3d59eb774e7ea0f5ebcce8cb420d_f0cjs_325.jpg?bg=0xffffff" style="border: 0;" /> </a> <br />
<a href="http://www.zazzle.com/dysautonomia_diva_shirt-235196598850949510?rf=238837801116539106">Dysautonomia Diva Shirt</a> by <a href="http://www.zazzle.com/dysautonomiasos*">DysautonomiaSOS</a> <br />
<br />
<br />
<div style="text-align: left;">
3. Advertose that you or your loved one is gravitationally challenged:</div>
<div style="text-align: left;">
<br /></div>
</div>
<br />
<div style="line-height: 150%; text-align: center;">
<a href="http://www.zazzle.com/gravitationally_challenged_tee-235371651760598489?rf=238837801116539106"> <img alt="Gravitationally Challenged Tee" src="http://rlv.zcache.com/gravitationally_challenged_tee-r1f9b75fe1fe54b91bce28326dff4e92a_f0czn_325.jpg?bg=0xffffff" style="border: 0;" /> </a> <br />
<a href="http://www.zazzle.com/gravitationally_challenged_tee-235371651760598489?rf=238837801116539106">Gravitationally Challenged Tee</a> by <a href="http://www.zazzle.com/dysautonomiasos*">DysautonomiaSOS</a> <br />
<i><span style="font-size: large;"><b><br /></b></span></i> </div>
<i><span style="font-size: large;"><b>IN CONCLUSION:</b></span></i> <br />
I hope by this to only start a conversation. I am not criticizing anyone, and again - I respect the efforts made by the chronically ill "invisible" community to get the word out in what ever way they can. But I hope that we can all start to speak up, stand up (if you are able), and be visible - and teach people (especially the medical world) about Dysautonomia and other conditions that may not be physically apparent, and start using more assertive terms and labels to promote and affect change. <br />
<br />
My hope is the focus will be on "chronic illness" instead of "invisible illness" - so we can name the real problem. It's not that you can't see what's wrong, but that what is wrong is chronic, painful, relentless, hard to understand, and life changing.<br />
<br />
Love to you all,<br />
Claire <br />
<br />Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com6tag:blogger.com,1999:blog-7709891692454052883.post-1014236572441830312012-07-26T15:45:00.001-04:002012-07-27T13:03:27.607-04:00Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...A post from my personal blog:<br />
<br />
<a href="http://bellaflorablog.blogspot.com/2012/07/parenting-from-bed-grief-guilt.html?spref=bl">Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...</a>: My daughter is 11 months old today. She is a gorgeous, bright, happy baby - granted who doesn't sleep very well - but she is such a joy ...Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0tag:blogger.com,1999:blog-7709891692454052883.post-77845996174735662112012-07-21T12:04:00.000-04:002012-07-21T12:06:29.331-04:00Find Your POTS Cause: The Wide World of Mast Cells (Sourced)<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-HdM35vTGW4k/UArQ0crTRRI/AAAAAAAAA0I/d5v0pplLCCc/s1600/MCADandPOTS.gif" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="236" src="http://3.bp.blogspot.com/-HdM35vTGW4k/UArQ0crTRRI/AAAAAAAAA0I/d5v0pplLCCc/s320/MCADandPOTS.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The proposed relationship between POTS and MCAD. </td></tr>
</tbody></table>
<span style="font-size: large;">MCAD and Mastocytosis are a confusing set of diseases and conditions. What aren't these days? I'd like to post about a nice, simple, straight forward and easy to understand condition for once, but alas, MCAD is exactly the opposite.</span><br />
<br />
<br />
<b><span style="font-size: large;"> What are Mast Cells?</span></b> <br />
<br />
Mast cells are cells of the immune system that are found around blood
vessels in the skin, gastrointestinal tract, respiratory tract, and
genitourinary tract, and are highly associated with nerves. They release chemicals including histamine that are very irritating and cause itching, swelling, and fluid leakage from cells.<br />
<br />
"Mast cells are known to be the primary responders in allergic reactions,
orchestrating strong responses to minute amounts of allergens. Several
recent observations indicate that they may also have a key role in
coordinating the early phases of autoimmune diseases, particularly those
involving auto-antibodies." <br />
<br />
<b><span style="font-size: large;">What is MCAD?</span></b><br />
As desribed technically, "Mast cell activation disease comprises disorders characterized by
accumulation of genetically altered mast cells and/or abnormal release
of these cells' mediators, affecting functions in potentially every
organ system, often without causing abnormalities in routine laboratory
or radiologic testing. In most cases of mast cell activation disease,
diagnosis is possible by relatively non-invasive investigation.
Effective therapy often consists simply of antihistamines and mast cell
membrane-stabilising compounds supplemented with medications targeted at
specific symptoms and complications. Mast cell activation disease is
now appreciated to likely be considerably prevalent and thus should be
considered routinely in the differential diagnosis of patients with
chronic multisystem polymorbidity or patients in whom a definitively
diagnosed major illness does not well account for the entirety of the
patient's presentation."<br />
<br />
<b>What does that mean?</b> In simpler terms - MCAD is a collection of hard to diagnose (because they often don't show up in standard blood work) conditions related to "mast cells behaving badly." Mast cells are almost everywhere in the body. When they break down, it is called <i>degranulation</i>, and in MCAD the mast cells do this in a seemingly random way; releasing histamine that the body reacts to, causing all kinds of skin reactions, anaphylaxis (throat closing/itching/blood pressure drops, etc...), and even causing heart rate fluctuations and shortness of breath in some.<br />
<br />
MCAD is also called MCA, or MCAS (the "S" stands for syndrome), and the current definitions by the WHO (World Health Organization) are being debated. Currently because of the WHO definitions of MCAD, it is very hard to get a solid diagnosis, and it is an under-diagnosed and misunderstood condition by many physicians. <br />
<br />
<a name='more'></a><br /><br />
<span style="font-size: large;"><b>What is the difference between MCAD and MASTOCYTOCIS: </b></span><br />
<br />
<span style="font-size: small;">Mastocytosis is classified into multiple categories, but the basic definition is that there are too many mast cells present in the body - whether it be a localized area (like the skin or an organ) or the entire body. This is different from MCAD in that there are normal levels (at least in blood tests such as serum tryptase) of mast cells, they just degranulate at the wrong time (or "misbehave" inappropriately) with MCAD.</span><br />
<br />
<span style="font-size: small;">"</span><b>Mastocytosis</b> should be suspected in patients who present with a
constellation of symptoms, including flushing, abdominal pain, diarrhea,
unexplained syncope, and classic <b>urticaria pigmentosa</b> lesions. <b>Diagnosis</b>
should be established by a bone marrow biopsy in all adults. Staging
should be performed to assess disease burden and evidence of end-stage
organ damage. Patients should be offered symptom-based treatment and
cytoreductive therapy only for aggressive systemic <b>mastocytosis</b> or an associated hematologic malignant neoplasm."<span style="font-size: small;"> </span><br />
<br />
<span style="font-size: large;"><b>Diagnosis and Criteria:</b></span> <br />
<br />
<b>(from the Mastocytosis Society, a re-post of the WHO definition of types of Mastocytosis only , they have yet to accept or define MCAD)</b><br />
<i><br /></i><br />
<i><span class="style1">Diagnosis and Classification</span></i><br />
<br />
CM is diagnosed by the presence of typical skin lesions and a positive
skin biopsy demonstrating characteristic clusters of mast cells. The
preferred method of diagnosing is via bone marrow biopsy. The World
Health Organization (WHO) has established criteria for diagnosing SM,
restated below:<br />
<br />
<b>Major Criterion:</b><br />
Multifocal dense infiltrates of mast cells (>15 in aggregate) in
tryptase-stained biopsy sections of the bone marrow or of another
extracutaneous organ. <br />
<br />
<b>Minor Criterion:</b><br />
1. In biopsy of bone marrow or other extracutaneous organ(s), more than
25% of the mast cells show abnormal morphology (that is, are atypical
mast cell type I or are spindle-shaped) in multifocal lesions in
histological examination. <br />
2. Detection of a point mutation at codon 816 in the KIT receptor gene.
This may be found in bone marrow, blood or other internal organ.<br />
3. KIT-positive mast cells in bone marrow, blood, or other internal organs are found to express CD2 and/or CD25.<br />
4. Serum total tryptase level persistently greater than 20 ng/mL. This
criterion cannot be used if the patient has a clonal non-mast cell
associated hematological disorder.<br />
<br />
The presence of one major and one minor criteria or three minor criteria
constitute the diagnosis of systemic mastocytosis. Diagnostic
techniques differentiate mastocytosis into the following categories: <br />
<br />
<b>Cutaneous Mastocytosis:</b><br />
Urticaria pigmentosa (UP) --- also known as maculopapular cutaneous
mastocytosis (MPCM), diffuse cutaneous mastocytosis (DCM), and solitary
mastocytoma. <br />
<br />
<b>Indolent Systemic Mastocytosis:</b><br />
These patients fit the criteria for systemic mastocytosis and may have
an enlarged liver or spleen. The GI tract may also be affected. The
majority of adult patients fit into this category. Mediator-related
symptoms are common, but the grade of bone marrow infiltration is low,
usually less than 5 percent. Mast cells usually co-express CD2 and CD25
with KIT and contain the KIT mutation D816V. In most patients the serum
tryptase concentration exceeds 20 ng/mL, but a normal level of tryptase
does not rule out either mastocytosis or another mast cell activation
disorder. Treatment usually includes mediator-targeting drugs, including
antihistamines, but does not usually require cytoreductive agents,
except for considering IFN-2b for severe osteoporosis. <br />
<br />
Isolated Bone Marrow Mastocytosis (BMM) and Smouldering Systemic
Mastocytosis (SSM) are subvariants of indolent SM. BMM is characterized
by absence of skin lesions, lack of multiorgan involvement, and low or
normal serum tryptase level. BMM patients may or may not require
treatment for mediator-related symptoms. In SSM two or three of the
following, which indicate high burden of mast cells may be observed:<br />
<br />
<b>1. </b>Infiltration grade is greater than 30 percent in bone marrow and total tryptase levels greater than 200ng/mL.<br />
<b>2.</b> Hypercellular marrow with loss of fat cells, discrete signs of
dysmyelopoiesis without substantial cytopenias or WHO criteria for an
MDS or MPD. <br />
<b>3.</b> Organomegaly: Palpable hepatomegaly, splenomegaly, or
lymphadenopathy (on CT or ultrasound) greater than 2 cm without impaired
organ function.<br />
<br />
<b>Systemic Mastocytosis with Associated Clonal Hematologic Non-Mast Cell Lineage Disease (AHNMD)</b><br />
These patients for the criteria for systemic mastocytosis and they fit
the WHO creiteria for myelodysplastic syndrome, myeloproliferative
syndrome, acute myeloid leukemia, or non-Hodgkin’s lymphoma. These
patients often do not have urticaria pigmentosa-like skin lesions.
Successful treatment of the hematologic disorder has not been shown to
change or improve their systemic mastocytosis. <br />
<b><br />
Agressive Systemic Mastocytosis:</b><br />
In this rare subvariant, these patients fit the criteria for systemic
mastocytosis; and their bone marrow biopsy reveals abnormal blood cell
formation that does not fit the WHO criteria for AHNMD as listed above.
These patients are characterized by bone marrow aspirate smears showing
less that 20% of the cells to be mast cells, no mast cells identified in
the circulating blood, and the presence of at least one finding below:<br />
<b>1.</b> An abnormal blood count;<br />
<b>2. </b>An enlarged liver, and liver function is impaired;<br />
<b>3.</b> An enlarged spleen, and its function is abnormal;<br />
<b>4.</b> Malabsorption with weight loss is present and is due to mast
cell infiltration in the GI tract that interferes with its normal
function;<br />
<b>5.</b> Bone involvement is seen with large areas of calcium loss and/or pathologic fractures; or<br />
<b>6.</b> Other internal organs are affected by mast cell infiltrates with impairment of organ function.<br />
<br />
<b>Mast Cell Leukemia:</b><br />
In this rare subvariant, these people fit the criteria for systemic
mastocytosis, and a bone marrow aspirate smear shows that 20% or more of
the cells are mast cells of 10% or more mast cells are seen in
circulating blood. The shape of mast cells and their nuclei have
malignant features.<br />
<br />
<b>Mast Cell Sarcoma:</b><br />
Mast cell sarcoma is an extremely rare tumor. In three cases reported so
far, the tumor has been located in the larynx, in the colon, and inside
the skull. Prognosis is very poor. People with mast cell sarcoma have a
single tumor made up of abnormal mast cells. They do not fit the
criteria for systemic mastocytosis, they have no skin lesions, and
pathological examination of the tumor shows it to be highly malignant
with an aggressive growth pattern.<br />
<br />
<b>Extracutaneous Mastocytoma:</b><br />
This is a very rare finding. Patients with extracutaneous mastocytoma do
not fit the criteria for systemic mastocytosis, they have no skin
lesions, and pathological examination of the lesion shows it to be made
up of normal or nearly normal appearing mast cells with a non-aggressive
growth pattern.<br />
<br />
When aggressive disease or an associated hematological disorder is suspected, further evaluation of the patient may include:<br />
<b>1.</b> X-ray or CT scan of the chest, looking for evidence of significantly enlarged lymph nodes (greater than 2 cm in diameter);<br />
<b>2. </b>X-ray of the skeletal system, looking for osteoporosis,
osteosclerosis, or areas where calcium has been completely lost from
bone;<br />
<b>3. </b>CT scan or ultrasound of the abdomen, looking for enlarged
liver or spleen, enlarged lymph nodes, or the collection of fluid; and<br />
<b>4.</b> Endoscopy and biopsy of the GI tract, looking for evidence of mast cell infiltration, ulcers, or areas of bleeding.<br />
<br />
Other tests may be done, as indicated, if there is a suspected
hematologic disorder or evaluate the individual patient’s symptoms. By
contrast, further testing should be kept to a minimum when the disease
seems to be confined to the skin, and in most pediatric cases.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-GOS1f7tUdVA/UArR4RHwJhI/AAAAAAAAA0Q/TdPVECvSOZk/s1600/mastcellsautoimmune.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="280" src="http://4.bp.blogspot.com/-GOS1f7tUdVA/UArR4RHwJhI/AAAAAAAAA0Q/TdPVECvSOZk/s320/mastcellsautoimmune.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From <a href="http://www.nature.com/nature/journal/v420/n6917/fig_tab/nature01324_F1.html" target="_blank">NATURE</a>: Mast Cells as amplifiers of autoimmune response</td></tr>
</tbody></table>
<br />
<br />
<br />
<b><span style="font-size: large;">THE NEWLY PROPOSED CRITERIA for MCAS:</span></b><br />
<span style="font-size: small;"><b>(from </b></span><span style="font-size: small;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/" target="_blank">Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options.</a></span><span style="font-size: small;"> )</span><br />
<br />
<br />
<div class="caption">
<div id="__p4">
Criteria proposed to define mast cell activation disease (for references, see text).</div>
</div>
<div class="large_tbl">
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left">Criteria to define <i>mast cell activation syndrome</i></th><th align="left">WHO criteria to define <i>systemic mastocytosis</i></th></tr>
</thead><tbody>
<tr><td align="left"><b>Major criteria</b></td><td align="left"><b>Major criterion</b></td></tr>
<tr><td align="left">1.
Multifocal or disseminated dense infiltrates of mast cells in bone
marrow biopsies and/or in sections of other extracutaneous organ(s)
(e.g., gastrointestinal tract biopsies; CD117-, tryptase- and
CD25-stained)</td><td align="left">Multifocal dense infiltrates of mast
cells (>15 mast cells in aggregates) in bone marrow biopsies and/or
in sections of other extracutaneous organ(s) (CD117-, tryptase- and
CD25-stained)</td></tr>
<tr><td align="left">2. Unique constellation of
clinical complaints as a result of a pathologically increased mast cell
activity (mast cell mediator release syndrome)</td><td><br /></td></tr>
<tr><td align="left"><b>Minor criteria</b></td><td align="left"><b>Minor criteria</b></td></tr>
<tr><td align="left">1.
Mast cells in bone marrow or other extracutaneous organ(s) show an
abnormal morphology (>25%) in bone marrow smears or in histologies</td><td align="left">1.
Mast cells in bone marrow or other extracutaneous organ(s) show an
abnormal morphology (>25%) in bone marrow smears or in histologies</td></tr>
<tr><td align="left">2. Mast cells in bone marrow express CD2 and/or CD25</td><td align="left">2. Mast cells in bone marrow express CD2 and/or CD25</td></tr>
<tr><td align="left">3.
Detection of genetic changes in mast cells from blood, bone marrow or
extracutaneous organs for which an impact on the state of activity of
affected mast cells in terms of an increased activity has been proved.</td><td align="left">3. c-kit mutation in tyrosine kinase at codon 816 in mast cells in extracutaneous organ(s)</td></tr>
<tr><td align="left">4. Evidence of a pathologically increased release of mast cell mediators by determination of the content of</td><td align="left">4. Serum total tryptase >20 ng/ml (does not apply in patients who have associated hematologic non-mast-cell lineage disease)</td></tr>
<tr><td align="left">• tryptase in blood</td><td><br /></td></tr>
<tr><td align="left">• N-methylhistamine in urine</td><td><br /></td></tr>
<tr><td align="left">• heparin in blood</td><td><br /></td></tr>
<tr><td align="left">• chromogranin A in blood</td><td><br /></td></tr>
<tr><td align="left">• other mast cell-specific mediators (e.g., leukotrienes, prostaglandin D<sub>2</sub>)</td><td><br /></td></tr>
</tbody></table>
</div>
<div id="__p5">
The diagnosis <i>mast cell activation syndrome </i>is
made if both major criteria or the second criterion and at least one
minor criterion are fulfilled. According to the WHO criteria [<a class="cite-reflink bibr" href="http://www.ncbi.nlm.nih.gov/pubmed/11377686" id="__tag_216020013" target="mainwindow">1</a>], the diagnosis <i>systemic mastocytosis </i>is established if the major criterion and at least one minor criterion or at least three minor criteria are fulfilled.</div>
<div id="__p5">
<br /></div>
<div class="caption">
<div id="__p6">
Frequent signs and clinical symptoms ascribed to episodic unregulated release of mast cell mediators (modified from [<a class="cite-reflink bibr" href="http://www.ncbi.nlm.nih.gov/pubmed/18662284" id="__tag_216020016" target="mainwindow">12</a>]; further references therein; an exhaustive survey is given in [<a class="cite-reflink bibr" href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/#B50" target="mainwindow">50</a>]).</div>
<div id="__p6">
<br /></div>
<div id="__p6">
<br /></div>
<div id="__p6">
<span style="font-size: large;"><b>HOW DOES THIS RELATE TO POTS?</b></span> </div>
<div id="__p6">
<br /></div>
<div id="__p6">
There seems to be a strong correlation between the HyperPOTS (elevated catecholemines in the blood) population and MCAD. Also, many POTSies present with flushing, and this can possibly be caused by MCAD (but also can be caused by autoimmune issues and dopamine).</div>
<div id="__p6">
<br /></div>
<div id="__p6">
Anaphylaxis can be triggered by standing up and also by exercising. This can be triggered by the blood vessels dilating (opening up) in response to mast cells going bonkers and releasing histamine. If the increased heart rate does its job and gets the blood pumping to the brain and other organs, you may not see a drop in blood pressure, just an increase in heart rate. Either way, if you have POTS, and flushing, and especially random reactions (skin and/or anaphylaxis) to food, chemicals, and other allergens, it may be worth checking out. </div>
<div id="__p6">
<br /></div>
<div id="__p6">
Here is the technical theory published by the researchers at Vanderbilt:</div>
<div id="__p6">
<br /></div>
<div id="__p6">
"Mast cells are localized in close proximity to blood vessels and peripheral nerves and are therefore strategically positioned
to modulate sympathetic activity, vascular tone, and angiogenesis.<a class="xref-bibr" href="http://hyper.ahajournals.org/content/45/3/385.full#ref-20" id="xref-ref-20-1"><sup>20</sup></a>
Histamine is a powerful vasodilator that could explain the cutaneous
vasodilatation responsible for flushing. With regard
to the pathophysiology underlying the
association between POTS and MCA, we propose a positive feedback loop by
which MCA,
with the subsequent release of vasoactive
mediators, may contribute to vasodilation, reflex sympathetic
activation, central
volume contraction, norepinephrine release, and
orthostatic intolerance (<a class="xref-fig" href="http://hyper.ahajournals.org/content/45/3/385.full#F4" id="xref-fig-4-1">Figure 4</a>). Conversely, our results indicate that exercise can lead to MCA, presumably through sympathetic activation."</div>
<div id="__p6">
<br /></div>
<div id="__p6">
MCAD has also been closely linked to EDS, JHS, and autoimmune diseases (to complicate things further). It seems these weird conditions come in clusters - lucky for us! </div>
<div id="__p6">
<br /></div>
<div id="__p6">
<b><span style="font-size: large;">SIGNS AND SYMPTONS OF MCAD</span> </b></div>
</div>
<div class="large_tbl">
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"></th></tr>
</thead></table>
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"></th></tr>
</thead></table>
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"></th></tr>
</thead></table>
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"></th></tr>
</thead></table>
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"></th></tr>
</thead></table>
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"></th></tr>
</thead></table>
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"></th></tr>
</thead></table>
<table class="rendered small default_table" frame="hsides" rules="groups"><thead>
<tr><th align="left"><br /></th><th><br /></th></tr>
</thead><tbody>
<tr><td align="left"><b><i>Abdominal</i></b></td><td align="left">abdominal
pain, intestinal cramping and bloating, diarrhea and/or obstipation,
nausea, non-cardiac chest pain, Helicobacter pylori-negative gastritis,
malabsorption</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Oropharyngeal</i></b></td><td align="left">burning pain, aphthae</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Respiratory</i></b></td><td align="left">cough, asthma-like symptoms, dyspnea, rhinitis, sinusitis</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Ophthalmologic</i></b></td><td align="left">conjunctivitis, difficulty in focusing</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Hepatic</i></b></td><td align="left">splenomegaly, hyperbilirubinemia, elevation of liver transaminases, hypercholesterolemia</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Splenomegaly</i></b></td><td><br /></td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Lymphadenopathy</i></b></td><td><br /></td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Cardiovascular</i></b></td><td align="left">tachycardia, blood pressure irregularity (hypotension and/or hypertension), syncope, hot flush</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Neuropsychiatric</i></b></td><td align="left">headache,
neuropathic pain, polyneuropathy, decreased attention span, difficulty
in concentration, forgetfulness, anxiety, sleeplessness, organic brain
syndrome, vertigo, lightheadedness, tinnitus</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Cutaneous</i></b></td><td align="left">urticaria pigmentosa, hives, efflorescences with/without pruritus, telangiectasia, flushing, angioedema</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Abnormal bleeding</i></b></td><td><br /></td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Musculoskeletal</i></b></td><td align="left">muscle pain, osteoporosis/osteopenia, bone pain, migratory arthritis</td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Interstitial cystitis</i></b></td><td><br /></td></tr>
<tr><td colspan="2"><hr />
</td></tr>
<tr><td align="left"><b><i>Constitutional</i></b></td><td align="left">fatigue, asthenia, fever, environmental sensitivities</td></tr>
</tbody></table>
</div>
<div id="__p5">
<br /></div>
<br />
<b><span style="font-size: large;">Sources and Links (the most recent and updated I could find):</span></b><br />
<br />
<ul>
<li><b><a href="http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf" target="_blank">Dr. Afrin's Presentation to the Mastocytosis Society</a></b> (shown in slide form instead of text):<i> I narrowed down slides of interest (with criterea and info) if you don't want to read all 150!</i> Slides: 7, 8*, 44, 47-51, 54-57, 79, 83, 84, 90, 91*-94, 98*-100, 115 - 119, 127-128, dx criteria 129-134, treatment 135-142, then keep reading for a spontaneous human combustion case! </li>
<li><h1 class="content-title">
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/" target="_blank"><span style="font-size: small;">Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options.</span></a><span style="font-size: small;"> </span><span style="font-size: small; font-weight: normal;">Gerhard J Molderings, Stefan Brettner, Jürgen Homann, and Lawrence B Afrin, <span class="citation-abbreviation">J Hematol Oncol. </span><span class="citation-publication-date">2011; </span><span class="citation-volume">4</span><span class="citation-issue"></span><span class="citation-flpages">: 10. </span><span class="fm-vol-iss-date">Published online 2011 March 22.<i><b>***This is the best article I have found and HIGHLY suggest you print it and show it to your doctor if you suspect you have MCAD. </b></i></span></span></h1>
</li>
</ul>
<ul>
<li><b> </b><span style="font-size: small;"><b><a href="http://hyper.ahajournals.org/content/45/3/385.full" target="_blank">Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders</a>.</b> <span class="name" itemprop="name">Cyndya Shibao</span>,<span class="name" itemprop="name"> Carmen Arzubiaga</span>,<span class="name" itemprop="name"> L. Jackson Roberts II</span>,<span class="name" itemprop="name"> Satish Raj</span>,<span class="name" itemprop="name"> Bonnie Black</span>,<span class="name" itemprop="name"> Paul Harris</span>,<span class="name"> Italo Biaggioni. </span><cite><abbr class="slug-jnl-abbrev" title="Hypertension">Hypertension.</abbr><span class="slug-pub-date" itemprop="datePublished">
2005;
</span>
<span class="slug-vol">
45:
</span><span class="slug-pages">
385-390.</span></cite></span> </li>
</ul>
<span style="font-size: small;"><cite><span class="slug-pages"></span></cite></span><br />
<ul>
<li><b><a href="http://www.blogger.com/goog_447970469"><span style="font-size: small;"><cite><span class="slug-pages"> </span></cite></span></a></b><span style="font-size: small;"><b><a href="http://www.ncbi.nlm.nih.gov/pubmed/22041891" target="_blank">Definitions, criteria and global classification of mast cell disorders with special reference to mast cell activation syndromes: a consensus proposal.</a></b> Valent P, Akin C, Arock M, Brockow K, Butterfield JH, Carter MC, Castells M, Escribano L, Hartmann K, Lieberman P, Nedoszytko B, Orfao A, Schwartz LB, Sotlar K, Sperr WR, Triggiani M, Valenta R, Horny HP, Metcalfe DD. Int Arch Allergy Immunol. 2012;157(3):215-25. Epub 2011 Oct 27.</span></li>
<li>
<h1>
<span style="font-size: small;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/9354811" target="_blank"><b>Mast cells</b></a>. Metcalfe DD<span style="font-weight: normal;">, Baram D, Mekori YA. Physiol Rev. 1997 Oct;77(4):1033-79.</span></span></h1>
</li>
<li><b><span style="font-size: small;"> </span>Butterfield JH. <a href="http://www.ncbi.nlm.nih.gov/pubmed/16931290" target="_blank">Systemic mastocytosis: clinical manifestations and differential diagnosis.</a>
</b>Immunol Allergy Clin N Am 2006 Aug; 26(3): 487-513.<span style="font-size: small;"> </span></li>
</ul>
<span style="font-size: small;"></span><br />
<ul>
<li><span style="font-size: small;">Bains SN, Hsieh FH. <a href="http://www.ncbi.nlm.nih.gov/pubmed/20143640" target="_blank">Current approaches to the <b>diagnosis</b> and treatment of systemic <b>mastocytosis</b>. </a><span style="font-weight: normal;">Ann Allergy Asthma Immunol. 2010 Jan;104(1):1-10; quiz 10-2, 41.</span></span><span style="font-size: x-small;"></span></li>
<li><h1>
<span style="font-size: x-small;"><span style="font-family: Arial,Helvetica,sans-serif; font-size: x-small;"></span></span><span style="color: #444444; font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: #666666; font-family: Times,"Times New Roman",serif;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/21947988" target="_blank">Clinical presentation and management of patients with <span class="highlight">hyperadrenergic</span> postural orthostatic tachycardia syndrome. A single center experience.</a> </span><span style="color: #666666;"> </span><span style="font-family: Times,"Times New Roman",serif;">Dr. Grubb, 2011 ***Full text - great guide.</span></span></span><span style="color: #444444; font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Times,"Times New Roman",serif;"></span></span></span><span style="font-size: small;"><b></b><b> </b></span></h1>
<h1>
<span style="color: #444444; font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"></span></span></h1>
<h1>
<span style="color: #444444; font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Times,"Times New Roman",serif;"></span></span></span><span style="font-size: small;"><span style="font-weight: normal;"></span></span></h1>
<h1>
</h1>
</li>
</ul>
<b><span style="font-size: large;"> Support Organizations/Info:</span></b><br />
<ul>
<li><a href="http://mastcelldisorders.wallack.us/yabb/YaBB.pl" target="_blank">Mast Cell Disorders Forum</a></li>
<li><a href="http://www.tmsforacure.org/welcome.php" target="_blank">The Mastocytosis Society</a></li>
<li><a href="http://tmsforacure.org/physicians/mab_1.php" target="_blank">List of Physicians specializing in MCAD (from the Mastocytosis Society)</a> </li>
<li><a href="http://www.ukmasto.co.uk/" target="_blank">The UK Mastocytosis Group</a></li>
</ul>Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com7tag:blogger.com,1999:blog-7709891692454052883.post-74311482625902207052012-07-14T09:28:00.000-04:002012-07-14T09:31:49.996-04:00Webinar Topic Suggestions? Top Researchers Participating!Hello everyone....<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-QeLT7DhsaPk/UAFzSjSbFjI/AAAAAAAAAzk/dFfjpJ20_4U/s1600/liferingblue.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://2.bp.blogspot.com/-QeLT7DhsaPk/UAFzSjSbFjI/AAAAAAAAAzk/dFfjpJ20_4U/s200/liferingblue.jpg" width="179" /></a></div>
As you know we are starting up our new non profit, Dysautonomia SOS, and we are working with NDRF (National Dysautonomia Research Foundation) on a few projects.<br />
<br />
One of these is a series of webinars with some of the top researchers in the field of Dysautonomia from Vanderbilt and Mayo (among others).<br />
<br />
<span style="font-size: large;">What topics would you like to see covered? We are collecting broad topics, and even specific questions if you have them to get an idea of what is needed by the patient community.</span><br />
<br />
Please comment here, message me, or <a href="mailto:dysautonomiaSOS@gmail.com" target="_blank">email me</a> with your suggestions. More details to come!<br />
<br />
THANK YOU!<br />
<br />
<a href="http://1.bp.blogspot.com/-V4hk_5GKs3E/UAFyhQc-JtI/AAAAAAAAAzc/25ni68SKcQI/s1600/logo+%285%29.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="160" src="http://1.bp.blogspot.com/-V4hk_5GKs3E/UAFyhQc-JtI/AAAAAAAAAzc/25ni68SKcQI/s320/logo+%285%29.jpg" width="320" /></a>And on a side note - we are SO excited about the amazing team that has come together for Dysautonomia SOS! We have a team of amazing volunteers, Medical Advisers, and all kinds of people contributing to make this a successful and impacting organization - not just in our region, but everywhere. <br />
<br />
<br />
If you are interested in sharing your story, volunteering, or getting involved in any way <a href="mailto:dysautonomiaSOS@gmail.com" target="_blank">let me know.</a> <br />
<br />
Have a great day!<br />
<br />
ClaireAnonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com8tag:blogger.com,1999:blog-7709891692454052883.post-83126732147163922252012-06-30T16:49:00.000-04:002012-06-30T16:49:09.544-04:00Pregnancy and POTS: Experiences & Resources PART 2In <a href="http://stoppotsvirginia.blogspot.com/2012/06/pregnancy-and-pots-exepriences.html" target="_blank">PART 1</a> of this mini-series, we discussed my first (excellent) POTS pregnancy and the data published regarding having healthy children when you have POTS. Now on to the tough part of this, as my second pregnancy was a nightmare. So here's an oversimplified version of what happened, and I'm including some thoughts and links regarding medications at the end.<br />
<br />
<b><span style="font-size: large;">The Second (NIGHTMARE) POTS Pregnancy:</span></b><br />
<br />
In December of 2010, I knew something was wrong. I had been functioning most days for the last few years since my son was born, with fluctuating symptoms that I had been trying to hide from business related folks, and had given up fixing with doctors. But they were tolerable - episodes of tachycardia, light-headedness, chronic pain and fatigue after working long hours, and severe hypoglycemia. <br />
<br />
I was suddenly feeling like I was going drop, and spinning, and my heart rate was nuts. I was also not retaining any fluids, no matter how much salt loading and drinking I did. Then I found out I was pregnant right after Christmas, and everything changed. Within a week, I was sick, bed bound, and knew something was severely wrong. The first week of January was my first trip to the ER after blacking out when I stood up too fast to grab my son (who decided climbing on a counter top was a good idea!), and I couldn't get my heart rate under control after, even laying flat. This is also when a month+ of vertigo began. Horrendous vertigo, like I had never before experienced. <br />
<br />
The month of January I was back and forth to the ER and was admitted multiple times. Then in early Feb I was sent to a rehad/nursing center because I needed constant monitoring, continuous IV fluids, and had a PICC line placed. Only once the IV fluids were upped did I start to see improvements with the vertigo. Unfortunately, my PICC line was not cared for, and I developed massive blood clots along the line that were ignored by the staff at the nursing home. We had to threaten legal action to get me medically released, as the doctor at that horrible place blew me off and thought I was having muscle pain - and was massaging Aspercreme into my clotted area (nice). <br />
<a href="http://1.bp.blogspot.com/-C7ytOB3o4sg/T-9juRX-amI/AAAAAAAAAzE/8k0IpeBV2yM/s1600/clot.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-C7ytOB3o4sg/T-9juRX-amI/AAAAAAAAAzE/8k0IpeBV2yM/s1600/clot.jpg" /></a><br />
After coming home, my nurse was appalled at what I told her and saw the state of my PICC line and sent me to the ER. We found out I had 5 DVT's and my jugular was completely clotted off. I hadn't been able to turn my neck for days, and they had been rubbing my clotted area at the nursing home, and the clots had broken off and started migrating to various dangerous locations. I was admitted again to the hospital, but was still blown off when I complained of extreme chest pain and difficulty breathing, and told "it's just your POTS" and sent home after a week. Well - it was not just my POTS - it was over a dozen bilateral pulmonary embolisms (PE's), plus a 2 cm clot in my right atrium. Turns out they had sent me home on the wrong dose of Lovanox (a blood thinner) and ignored my OB doctors demands for my clotting factor to be tested. If I had not kept going back to the ER and demanding they do something or I was going to pull out that stupid PICC line myself, I would have died, along with the baby. Being pregnant, bed-bound, and having a PICC line is the trifecta of blot clotting risks. Add to that the fact that they finally tested me for clotting factor conditions, and I came out positive for the Factor V Leiden gene, so basically I was a clot waiting to happen. It took me almost dying to get the treatment I needed, and even after that - it was a 9 month struggle and fight with the hospital and doctors around here. <u>That's why I advise people to have a plan in place and a support network of good doctors familiar with your brand of POTS</u>. <br />
<br />
<a name='more'></a><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-6wzrP87z0R8/T-9hEN9pXKI/AAAAAAAAAys/V6boFUNBG80/s1600/PEs.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-6wzrP87z0R8/T-9hEN9pXKI/AAAAAAAAAys/V6boFUNBG80/s1600/PEs.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The anatomy of PE's</td></tr>
</tbody></table>
At that point, I was in the fancy Heart Hospital being treated mainly for the PEs, was told I may have to terminate the pregnancy because of the clot in my heart, and they were considering surgeries and all kinds of fun things. I kept having PE's for the next 2 months as my clots broke off, so that was awesome. I stayed inpatient in the hospital, and the vertigo eventually subsided completely, but I was already deconditioned and very POTSy. Without fluids my BP was crazy low, and my heart rate was shooting up. They tried weaning me off fluids and my BP and HR got so bad they threw in the towel and sent me up to Hopkins. I had only been home about a week total in between admissions at that point in 3 months. I missed my son, my husband, and my doggies. I had to shut down my successful and busy floral design business. I had to back off from another business (opening a loft style event venue) we had started up and finalized the papers for right before I got extremely sick. I rarely had visitors, mainly because my lungs were in such pain that I couldn't tolerate talking and wanted to save what little I had in me for my short visits with my son. And because people had better things to do (just being honest). <br />
<br />
I went to Hopkins, and then started having vasovagal (dropping blood pressure AND heart rate) fainting episodes - which scared the heck out of me. I had never had these before. My O2 saturation would drop dramatically as well. They were catching all this on the monitors, but still tried to send me to my parents house in NoVA after a week of no improvements, and weaning me off IV fluids by making me consume mass quantities of salt and water. After they decided I would not have to terminate the pregnancy AGAIN due to the massive clot in my heart, they decided I "just had POTS" and was on my way. I fainted twice on the way out of the hospital and while in the car, so we turned around and my parents demanded I be re-examined. The OB docs finally turned me over to an excellent team of internal medicine doctors who consulted with Dr. Peter Rowe, who normally only treats kids, but is a POTS specialist and was brought in to help. They were mortified at me being sent home. They started me on Florinef (only .025mg slowly titrated up to .1mg/day) and had their amazing physical therapist follow his regimen for POTS. This is another reason I suggest you have not only OB doctors lined up, but a POTS knowledgeable cardio and neuro if possible. Both sets of high risk OB doctors I dealt with meant well, but really had no clue how to handle severe POTS. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-JWaQy9AbH3o/T-9g2q-PIxI/AAAAAAAAAyk/qkCsYum3GYo/s1600/superuterus.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="160" src="http://3.bp.blogspot.com/-JWaQy9AbH3o/T-9g2q-PIxI/AAAAAAAAAyk/qkCsYum3GYo/s200/superuterus.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">super uterus!</td></tr>
</tbody></table>
Through this, the baby was thankfully fine. I had radioactive lung scans, X-rays, multiple MRI's, CAT scans, and lots of antibiotics because no matter what, my white blood cell count is always high to this day (no one seems to know why, or care much, but I did recently come back positive for chronic EBV, so who knows). Our little girl was curled up in my super uterus of protection, and growing and developing normally. Thank God.<br />
<br />
The rest of the pregnancy was much of the same. Doctors scratching their heads, me being sent back to Norfolk to be close to my family (hadn't seen my son in a month!), having to fight about medications I wasn't comfortable taking, not being able to talk/breath, being in massive amounts of pain, oh - and passing out A LOT. Passing out on blood thinners while pregnant makes you a liability nightmare. So I had all kinds of fun rules during my confinement, like having to pee in a bucket with someone in the room holding me up, no showers - only sponge baths, and periods when I had to have complete strangers in my room monitoring me 24 hours a day because I would pass out just from sitting up, and they didn't want me falling out of bed (it happened a few times).<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-KRP17oM5Q0Q/T-9hgzBfclI/AAAAAAAAAy0/PeqDfcYD4Qw/s1600/LukasBdayinHospital.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-KRP17oM5Q0Q/T-9hgzBfclI/AAAAAAAAAy0/PeqDfcYD4Qw/s320/LukasBdayinHospital.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My son celebrating his birthday on my hospital bed</td></tr>
</tbody></table>
I got to go home over the summer while my husband was home from teaching for about 3 weeks, which was nice, except it was terrifying due to my radical swings in blood pressure and heart rate, and having to lay on my left side for 6 months straight had gotten old. At that point, if I rolled onto my right, I was dizzy and my BP went nuts. So the left side it was - and it hurt. I have costochondritis (chronic rib tissue inflammation), and have been told I have everything from Fibro to Chronic Fatigue, to possible connective tissue disorders - all of which I ignored up until this experience. The constant pain for many months on end and no way to get up and stretch or walk around was horrendous.<br />
<br />
So back to the hospital I went, and there I stayed praying for labor until 38 weeks finally came and my amniotic fluid started leaking. Actually, my resident felt so bad for me she swept my membranes pretty forcefully without telling anyone a few times to get the show on the road. Leading up to that, they could not get my blood thinnned properly, and had switched me back to heparin shots - of which I needed 12 a day. This lasted for a few weeks, until I begged to be on an IV, since I was getting continuous saline anyways. They showed mercy for once, my legs were black and blue and swollen and I had to lay on my left, so that felt awesome. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-ssgGBivH_ss/T-9i-wouGgI/AAAAAAAAAy8/G06KEOqdxu4/s1600/img_6852_0.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://3.bp.blogspot.com/-ssgGBivH_ss/T-9i-wouGgI/AAAAAAAAAy8/G06KEOqdxu4/s200/img_6852_0.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Gabi! </td></tr>
</tbody></table>
At multiple times through this, the cardiologists, endocrinologists, OB's, internists, hematologist, vascular surgen, and neurologist all told me NO MORE BABIES. I even had one cardiologist tell me she would tie my tubes herself! But that made the health of the baby that much more important and stressful, and again - she is a tough little girl that make it through this unscathed. Birth was once again hell, I really hate the act of having babies -and I won't go into the gory details because it was so terrifying and painful I think I'll be in therapy for a while dealing with it. I won't go into the details of being kept inside a hospital for 9 months, not being able to see my son regularly, tuck him in at night, wondering if I would be around to see him grow up, and the toll it took on my marriage and how much my husband did to help our family survive. In the end, Gabriella was born, after a few smacks from the doctor she perked up and has done great ever since. So it was all worth it, and I would do it again if I had to for her. But NO MORE BABIES FOR ME :) <br />
<br />
<b><span style="font-size: large;">So - that was long - but here are a few take home points from my terrible, scary, therapy and PTSD inducing second POTS pregnancy:</span></b><br />
<br />
<span style="font-size: large;"><span style="font-size: small;">1. You must fight for what you think is right for you and your unborn child. Do not let doctors, family, or anyone else force you into taking drugs or participating in activities you feel in your gut are not right. I of course consulted with my husband, and it was incredibly hard to be my own advocate, but because of my science background and how complex POTS is, I really felt no one else knew what they were doing. Some of my doctors admitted this to me. They were willing to just throw medication at me to see if they worked - with no knowledge of how they would effect the baby. I had to fight and stick up for myself, and do research on my iphone from a hospital bed if necessary. </span></span><br />
<span style="font-size: large;"><span style="font-size: small;"><br /></span></span><br />
<span style="font-size: large;"><span style="font-size: small;">2. Learn about blood clots, and consider getting tested for clotting factors. Pregnancy ups your risk for clotting anyways, and if you are sick and in bed a lot, that increases your risk even more. They can run a simple genetic blood screen to test to see if you are more prone to clotting, especially the <a href="http://ghr.nlm.nih.gov/condition/factor-v-leiden-thrombophilia" target="_blank">Factor V Leiden</a> (which it turns out is quite common).</span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: small;">3. Find your <a href="http://stoppotsvirginia.blogspot.com/2012/04/what-is-causing-your-pots-and-why-it-is.html" target="_blank">POTS cause</a>. If I had known (and I still don't! They are still testing me!) what was causing my POTS, my treatment would have most likely been drastically different and not a crapshoot of treatment options, none of which I fancied much.</span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: small;">4. Have a <a href="http://stoppotsvirginia.blogspot.com/2012/01/creating-pots-binder.html" target="_blank">medical binder</a> with printed out research and medical journal articles about POTS and what is causing it (if you know), your medical records, and any other info needed with you at all times in case you end up in the ER. </span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: small;">5. Find a support group or consider therapy if needed. Being POTSy is scary enough - add pregnancy into the mix and it can get down right terrifying. There is no shame in that. You can get helpful hints and tools from other Moms who had kids with POTS as well. We started a <a href="https://www.facebook.com/groups/374329345913324/" target="_blank">Facebook group</a> for Parents that suffer from Dysautonomia, and have lots of expectant women in it as well. </span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: small;">6. Avoid bed rest and deconditioning at all costs, unless you absolutely must for your health and the babies. This is what I am convinced made everything worse for me, and ALL Dysautonomia doctors agree that you must stay upright and active as much as possible to keep symptoms at bay. I am still fairly bed bound, and almost totally wheelchair bound with zero activity tolerance 10 months after having the baby. The PT at Hopkins got this, but unfortunately back home they were more concerned with liability than the long term effects of forcing me to stay in bed (I'm not bitter, I swear!).</span></span><br />
<span style="font-size: large;"><span style="font-size: small;"><br /></span></span><br />
<span style="font-size: large;"><span style="font-size: small;"><b><span style="font-size: large;">Information Regarding Medications and Pregnancy:</span></b></span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: small;">I wanted to provide some links to resources regarding meds and pregnancy, as this is a hot topic, and unfortunately there is just not a ton of info on how medications effect unborn babies. This is actually good - who wants clinical trials performed on fetuses! ALWAYS talk to your doctor about medications, I am just providing links.</span></span><br />
<br />
<ul>
<li><a href="http://safefetus.com/search.php/index/fda" target="_blank"><span style="font-size: large;"><span style="font-size: small;">The Safety Categories Explained</span></span></a></li>
<li><span style="font-size: large;"><span style="font-size: small;"><a href="http://www.webmd.com/baby/guide/taking-medicine-during-pregnancy" target="_blank">Web MD; Health and Pregnancy: Safe Medications</a> (Over the counter listing and alternative medications included as well)</span></span></li>
<li><span style="font-size: large;"><span style="font-size: small;"><a href="http://www.drugs.com/pregnancy/fludrocortisone.html" target="_blank">Florinef and Pregnancy Warnings</a> (it seems pretty widely accepted that Florinef is one of the safer drugs to take, as people with Addisons and other conditions have taken it for many years with no statically significant harm to unborn children.)</span></span></li>
<li><span style="font-size: small;"><a href="http://www.drugs.com/pregnancy/midodrine.html" target="_blank">Midodrine Pregnancy Warnings</a>:</span><b><span style="font-size: small;"> </span></b><span style="font-size: small;">Midodrine has been assigned to <a class="itxtrst itxtrsta itxthook" href="http://www.drugs.com/pregnancy/midodrine.html#" id="itxthook1" rel="nofollow" style="background-color: transparent; border-bottom: 0.075em solid darkgreen; color: darkgreen; font-weight: normal; padding-bottom: 1px; text-decoration: underline;"><span class="itxtrst itxtrstspan itxthookspan" id="itxthook1w0" style="background: none repeat scroll 0% 0% transparent; color: darkgreen; font-weight: inherit;">pregnancy</span></a>
category C by the FDA. Animal studies have revealed an increase in the
rate of embryo resorption, reduced fetal body weight, and reduced fetal
survival when administered in doses up to 13 times the recommended
human dose. Animal studies have failed to reveal evidence of
teratogenicity. There are no controlled data in human pregnancy.
Midodrine is only recommended for use during pregnancy when benefit
outweighs risk.</span></li>
<li><span style="font-size: small;"><a href="http://voices.yahoo.com/taking-beta-blockers-during-pregnancy-660606.html" target="_blank">Beta Blockers during pregnancy</a> </span></li>
<li><span style="font-size: small;">Support group threads I found helpful discussing medications during pregnancy:</span></li>
<ul>
<li><span style="font-size: small;"><a href="http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/POTS-and-Pregnancy/show/630774" target="_blank">POTS and Pregnancy</a> </span></li>
<li><span style="font-size: small;"><a href="http://forums.dinet.org/index.php?/topic/11171-midodrine-and-pregnancy/" target="_blank">DINET</a> - you can do a search and find loads of threads on meds and pregnancy</span></li>
<li><span style="font-size: small;"><a href="http://www.medhelp.org/posts/Heart-Disease/beta-blockers-that-are-safe-during-pregnancy/show/11074" target="_blank">Beta Blocker discussion</a></span></li>
<li><a href="http://forums.realthyroidhelp.com/viewtopic.php?f=2&t=15526&sid=6be243a7cbc267e96b968e5f8d6f1070">Florinef, Pregnancy and Bioidentical Aldosterone</a> <span style="font-size: small;"> </span></li>
<li><span style="font-size: small;">GOOGLE IT. Try to find reputable sites, like through the NIH or Mayo Clinic </span></li>
</ul>
</ul>
<span style="font-size: large;"><span style="font-size: small;"> </span></span><b>That's it! </b> Hope this helps, and feel free to email me with any questions or for links to resources.<br />
<span style="font-size: large;"><span style="font-size: small;"> </span></span><br />
<span style="font-size: large;"><span style="font-size: small;">--Claire</span> </span><br />
Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com1tag:blogger.com,1999:blog-7709891692454052883.post-33248747377601911382012-06-30T10:16:00.000-04:002012-06-30T10:16:27.345-04:00Volunteer Positions for Dysautonomia SOS!<a href="http://1.bp.blogspot.com/-ccRdzvgilKc/T-8J1DD0EcI/AAAAAAAAAyY/fCfCjCZijk4/s1600/recruit.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://1.bp.blogspot.com/-ccRdzvgilKc/T-8J1DD0EcI/AAAAAAAAAyY/fCfCjCZijk4/s200/recruit.jpg" width="131" /></a>We are on our way! Very excited about the amazing team we have forming for Dysautonomia SOS, the new Non Profit serving VA, DC, MD and beyond. A formal announcement will be coming soon, but we still need help! If you or any family/friends are intersted in volunteering, please contact us at dysautonomiaSOS@gmail.com. Together, we can make a HUGE difference!<br />
<br />
<br />
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<b><u><span style="font-family: "Times New Roman","serif"; font-size: 16pt;">Dysautonomia SOS
Volunteer Project List</span></u></b></div>
<div class="MsoNoSpacing">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Dysautonomia
SOS is a new Non-Profit organization forming to better serve the VA/DC/MD
area’s dysautonomia patients, as well as providing materials for everyone
online.<span style="mso-spacerun: yes;"> </span>We need your help to get up and
running, and start improving the lives and treatment options for patients.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">If
you are interested in any of the following projects, please email Claire at </span><a href="mailto:dysautonomiaSOS@gmail.com"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">dysautonomiaSOS@gmail.com</span></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">.<span style="mso-spacerun: yes;"> </span>Please use the exact project name to identify
what you are interested in.<span style="mso-spacerun: yes;"> </span>Feel free to
tell us about yourself so we can get to know you as well.<span style="mso-spacerun: yes;"> </span>Patients, family, caregivers, and friends are
all welcome to volunteer!<span style="mso-spacerun: yes;"> </span>Thanks for
your interest and support in making this a success!</span></div>
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<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Physician Listing
Coordinators:<span style="mso-spacerun: yes;"> </span></b>Update the physician
listings for VA, DC, and MD.<span style="mso-spacerun: yes;"> </span>We will
need the name, specialty, facility name (if applicable), phone, email, and full
address. We are looking to list anyone who treats and has experience with
dysautonomia, including primary care/internal medicine doctors.<span style="mso-spacerun: yes;"> </span>If you would like to research a specific
region, let us know.</div>
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<b style="mso-bidi-font-weight: normal;">Content Editors:<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></b>Review
materials for the newsletter, web content, brochures, scientific write-ups, and
any other content to check for grammar, punctuation, and content accuracy. <span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Science Writers and
Advisors:<span style="mso-spacerun: yes;"> </span></b>Looking for anyone with a
scientific or medical background to help write educational materials for a
variety of projects, and review materials periodically. </div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Newsletter and
Feature Contributors:<span style="mso-spacerun: yes;"> </span></b>We will need
contributions for our newsletter and web features on a regular basis.
Everything from patient stories, to regular columns related to living with
Dysautonomia.<span style="mso-spacerun: yes;"> </span>Parenting kids with POS,
caregiver stories, diagnosis stories, treatment options that have worked for
you, etc…</div>
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<b style="mso-bidi-font-weight: normal;">Sponsorship
Coordinators: <span style="mso-spacerun: yes;"> </span></b>Collect and research
local/regional potential sponsor information.<span style="mso-spacerun: yes;">
</span>Anyone providing services that pertain to dysautonomia, or any personal
contacts with businesses that would be willing to be a sponsor need to be
compiled and eventually contacted.<span style="mso-spacerun: yes;"> </span>If
you would like to research a specific region only, let us know.</div>
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<b style="mso-bidi-font-weight: normal;">Events/Fundraising
Coordinator: <span style="mso-spacerun: yes;"> </span></b>Oversee and aid with
local and regional events.<span style="mso-spacerun: yes;"> </span>Find creative
ways to fundraise for the organizations projects and research we are
supporting. Professional event experience preferred.</div>
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<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Accountant/Bookkeeper:
</b><span style="mso-spacerun: yes;"> </span>Someone with NPO<span style="mso-spacerun: yes;"> </span>to prepare our annual report and help with
bookkeeping.</div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;">Regional Support
Group and Event Hosts:<span style="mso-spacerun: yes;"> </span></b>VA/DC/MD is a
large region!<span style="mso-spacerun: yes;"> </span>If you would like to host
an event or support group in your area, let us know.<span style="mso-spacerun: yes;"> </span>Whether it be a Skype meeting, in person, or
an official event, we will need as many people as possible helping with this. <span style="mso-spacerun: yes;"> </span></div>
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<b style="mso-bidi-font-weight: normal;">Social Media Coordinator:<span style="mso-spacerun: yes;"> </span></b>Make sure all social media accounts are
up to date and the latest news is being shared about our organization in a
professional manor.<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;"><span style="mso-spacerun: yes;"> </span></b></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;">Media Blast Brigade:</b>
<span style="mso-spacerun: yes;"> </span>We need lots of “Re-Tweeters” and
“Re-Posters” of important news and announcements across social media.<span style="mso-spacerun: yes;"> </span>If you would like to updated on any new
happenings or announcements that you can share with your network, send us an
email and we’ll keep you posted (so you can re-post!).<span style="mso-spacerun: yes;"> </span>This is a VERY important part of our awareness
campaign!</div>
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<b style="mso-bidi-font-weight: normal;">General Volunteers: <span style="mso-spacerun: yes;"> </span></b>We will always need volunteers!<span style="mso-spacerun: yes;"> </span>Want to be notified when new projects and
positions come available?<span style="mso-spacerun: yes;"> </span>There a ton in
the works.<span style="mso-spacerun: yes;"> </span>Email us and we’ll keep you
updated! </div>
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<br />
<br />Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com4tag:blogger.com,1999:blog-7709891692454052883.post-8960480082225905592012-06-28T06:46:00.002-04:002012-07-09T20:42:32.907-04:00Pregnancy and POTS: Experiences & Resources PART 1<a href="http://1.bp.blogspot.com/-2qya-ikw0is/T-wyzQaR76I/AAAAAAAAAx0/IaRboQ73ZxE/s1600/question.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://1.bp.blogspot.com/-2qya-ikw0is/T-wyzQaR76I/AAAAAAAAAx0/IaRboQ73ZxE/s200/question.jpg" width="190" /></a>This is a big issue for women and families affected by POTS, and the topic I get the most questions about. Being that POTS affects mostly women of childbearing age, and there are very few resources out there, and even fewer research articles, this is not surprising. I have heard from patients that their doctors are telling them not to have kids, which is heartbreaking, and the science just doesn't back that up for <i>MOST</i> women with POTS. POTS already robs us of so many things- don't let it rob you of kids (if you want them)! If you don't have any life threatening genetic diseases that can be passed on, are not on any medications that keep you alive that would damage a baby, and really want kids - there is no reason not to consider it in my opinion. It is a very personal decision. <a href="http://stoppotsvirginia.blogspot.com/2012/04/what-is-causing-your-pots-and-why-it-is.html" target="_blank">Your underlying cause of your POTS</a> is a HUGE consideration, as well as your functionality and support system. Of course consult with a doctor about anything medical, as I am not one. <br />
<br />
The issue of what drugs to take, how to plan, and what to expect can make for a frightening experience if you don't get as educated as possible on the subject. <br />
<br />
I tell everyone: PLAN FOR THE WORST, HOPE/PRAY FOR THE BEST.<br />
<br />
<div style="text-align: right;">
<a href="http://3.bp.blogspot.com/-1qqDl2eCZFM/T-wzY4pyKjI/AAAAAAAAAx8/yzdh8arsBOE/s1600/potsycrack.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-1qqDl2eCZFM/T-wzY4pyKjI/AAAAAAAAAx8/yzdh8arsBOE/s1600/potsycrack.jpg" /></a><u><span style="font-size: large;">Things to consider when planning for the worst:</span></u></div>
<div style="text-align: right;">
-Do you have a good medical team of doctors, including a POTS knowledgeable cardiologist, a high risk OB, and possibly a neurologist? </div>
<div style="text-align: right;">
-Do you have a support network in place in case you are bed bound, non-functional, or severely ill during pregnancy? Especially if you have other children?</div>
<div style="text-align: right;">
-Do you have a support network in place to help with the baby after you give birth, especially if recovery takes longer than expected or you have complications from birth? </div>
<div style="text-align: right;">
-Are you on any medications that could possibly harm the baby, and are you willing to try and function without them if necessary?</div>
<div style="text-align: right;">
-Do you have any underlying conditions that could further complicate pregnancy, and specialists and support lined up to help deal with those possible complications as well? </div>
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<a name='more'></a><br />
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In my opinion, the best way to alleviate fears and make rational decisions is to first educate yourself about your condition and how it effects pregnancy and birth by reading medical information and talking to other women who have had babies with POTS. Please remember though, that everyone has POTS for a variety of reasons. So just because someone has a horror story about their experience does not mean you will too. We are all different. <br />
<br />
So here is a quick (well, kind of quick) run down describing my experiences, some literature you can print for your doctors, and some thoughts and links on medications. This will be a long post, so broken into two parts. I have had two children after having had POTS for years. POTS first hit me out of nowhere in late 2002, and has waxed and waned for me since, with really low times, and highly functional periods as well. My first pregnancy was a magic cure for my POTS, and the second almost killed me and has left me disabled. Luckily I have two healthy children as a result, and survived. <br />
<b></b><br />
<br />
<span style="font-size: large;"><b>BABY NUMBER ONE (A good pregnancy experience, no medications):</b></span><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-VFfXXSOIbnw/T-w1cLWKFhI/AAAAAAAAAyM/02bhudQR2Lo/s1600/10727_1238868460196_6920207_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-VFfXXSOIbnw/T-w1cLWKFhI/AAAAAAAAAyM/02bhudQR2Lo/s320/10727_1238868460196_6920207_n.jpg" width="196" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My son and I (day trip to a state park)</td></tr>
</tbody></table>
My pregnancy with my son (now 4), was incredible. I was already off meds; a Beta Blocker (Toprol) and Florinef, as a result of a miscarriage that occurred 2 months prior at 8 weeks along. During the first pregnancy, I was taken off meds around 6 weeks. I miscarried 2 weeks later. I'm not saying there is a connection - I have no way to ever know, but it was heartbreaking and very traumatic, as those of you who have miscarried know.<br />
<br />
After the miscarriage in 2007, I stayed off the meds and actually was doing fine (physically), as I had hated the side effects from those drugs and it was a relief to not deal with them. Then we unexpectantly got pregnant two months later, and I was scared, relieved, happy, nervous, and many more things - but none of them had to do with POTS. Since the miscarriage and going off meds, my symptoms had dramatically abated. I was not focused on POTS, had stopped frequenting the online support groups, and had such a hard time finding answers and care locally that I decided to focus on being well and enjoying life and trying to recover from losing the first baby.<br />
<br />
My OB doctors immediately had me listed as high risk due to the POTS diagnosis, and my first trimester was miserable, but only because of hyperemisis (lots of vomiting). Even though I was barfing 4-5 times as day, I never got dehydrated, never had IV fluids, and my tachycardia was unnoticeable. I worked the entire time (I owned a floral design business/shop), it was the middle of wedding season - and I was making flowers for multiple weddings each week. Its very physical work, and I was miserable because of the vomiting, but tolerated being on my feet 8-10 hours a day and lugging around buckets of water and boxes of flowers just fine.<br />
<br />
Once in the second trimester, we breathed a HUGE sign of relief after having healthy scans of the baby, and I continued to puke and feel sick to my stomach until about 5 months along. This is where I really started to feel good - the nausea lessened, I only threw up on occasion, and my body felt stronger and better than it had in years. I was doing exercise dvd's at home, staying super active with work, and was not dizzy or tachycardic at all.<br />
<br />
Much of the same continued into the third trimester. I worked and worked and worked. On my feet all day, meetiong with clients, making flowers, setting up weddings, all the way up until Valentine's Day of 2008. I was 9 months pregnant, my main assistant had bailed on me, so I had one helper doing deliveries and made over a hundred arrangements by myself in 2 days, and then called it quits. I was a few weeks away from being due, and my POTS finally kicked in, and after the Valentine's flower making marathon, I crashed. My Mom came to help me, as I was pretty sick. I closed up shop and went home to be miserable until the baby was born (and planned to be closed for 2 months after). I actually almost passed out with my Mom in tow while renewing my business license, and then went into labor the next day. <br />
<br />
Labor was horrible, as I have 11 pieces of titanium in my lower back, and was told I couldn't have an epidural - so we hired a Douala (birth helper lady) who ended up getting the flu the week I gave birth. So we were on our own with no pain killers, insane contractions front to back from my knees to my neck, and no sleep for 36 hours. I was in "official" labor for 28 hours. After 20 hours, I told them to get the baby out however they had to - and begged for a C-section, but my doc gave me morphine instead to try and "re-set and calm" my uterus to make the contractions more efficient. I had a horrible reaction to the morphine, no way to mentally cope with the contractions, and highly recommend avoiding morphine at all costs during labor! But it did the trick, and my contractions became more regular. My doctor then found an anesthesiologist to try an epidural before throwing in the towel for a C-section, and he did it with no problem. Relief! They broke my water, I napped, and woke up ready to get the show on the road. Pushed the baby out in a hour and had my gorgeous healthy boy at 2:15 AM. I only took ibuprofen after, but ended up staying the full 2 days and getting fluids because I felt a bit dehydrated and my heart rate was a little high.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-WIUx5IJvq1E/T-w1HlLnpUI/AAAAAAAAAyE/iNLLT0aIFUA/s1600/229167_1985329201248_3119511_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="149" src="http://2.bp.blogspot.com/-WIUx5IJvq1E/T-w1HlLnpUI/AAAAAAAAAyE/iNLLT0aIFUA/s200/229167_1985329201248_3119511_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and my munchkin :)</td></tr>
</tbody></table>
I nursed my son for 7 months or so, and remained relatively symptom free for that time. Most doctors agree that the fluid increase both during pregnancy and while breastfeeding makes women with POTS due to <b>hypovolemia</b> (low blood volume) feel better. What they don't tell you is that if something else it causing your POTS, or if you have an underlying disease that they may not have found (like me), your pregnancy experience may be completely different. I was lucky with my first, and think my underlying cause had not progressed at that point. Pregnancy number two was the complete opposite. <br />
<br />
Most of the major doctors/researchers in the field agree its a 50/50 chance as to whether you'll feel better or worse. But all the data points to women with POTS having healthy babies at the same statistical rate as non-POTS women. All POTSy women, no matter how mild, should consult with your OB and find out what they know about POTS. Consider a high risk OB, or have one on standby just in case things get complicated, especially during delivery. <br />
<br />
Here are some links to the most recent articles, results, and explanations related to POTS and pregnancy:<br />
<br />
<div style="font-family: Arial,Helvetica,sans-serif;">
<b><span style="font-size: x-small;"><span style="font-size: medium;">Pregnancy and POTS:</span></span></b></div>
<br />
<span style="font-family: Georgia,"Times New Roman",serif; font-size: large;">1.<a href="http://www.ncbi.nlm.nih.gov/pubmed/20136369" target="_blank"><span class="highlight"> Postural</span> <span class="highlight">tachycardia</span> <span class="highlight">syndrome</span> complicating pregnancy.</a> (Mayo Clinic, </span><span style="font-size: large;">J Matern Fetal Neonatal Med. 2010 Aug;23(8):850-3</span><span style="font-family: Georgia,"Times New Roman",serif; font-size: small;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/20136369" target="_blank"><span style="font-size: large;">)</span></a></span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif; font-size: small;">"</span>RESULTS: <br />
Patients who did not require treatment for POTS
before conception were less likely to have an exacerbation of symptoms
or need reintroduction of treatment. Exacerbations of POTS during
pregnancy are variable. Of our patients with exacerbations of symptoms,
increases in the existing pharmacologic treatments, such as increasing
beta-blocker dosage, was effective in palliation of symptoms. There were
seven vaginal deliveries. Two patients delivered without neuraxial
anesthesia; the other five deliveries were done using epidural
anesthesia without associated complications. POTS does not seem to
contribute to pregnancy-related complications. Importantly, there were
no adverse intrapartum events attributable to POTS.<br />
CONCLUSIONS: <br />
Pregnant
women with POTS may undergo safe regional anesthesia and vaginal
delivery. This contradicts earlier reports in the literature
recommending cesarean delivery."<br />
<br />
<b>SUMMARY:</b> POTS pregnancies vary based on POTS symptoms (CAUSES!) prior to conception, C-sections are not recommended unless completely necessary, and epidurals are safe for POTS women. <br />
<span style="font-family: Georgia,"Times New Roman",serif; font-size: small;"> </span>
<br />
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: large;">2. <a href="http://www.ncbi.nlm.nih.gov/pubmed/17179264">Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient. </a>(Anesth Analg. 2007 Jan;104(1):166-7.) </span></div>
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</div>
<div style="font-family: Georgia,"Times New Roman",serif;">
*** FREE FULL TEXT, I recommend you print this and bring it to your OB, it is a case study, but discusses how to treat POTS patients during labor and delivery in terms of anesthesia and provides links to resources for your doctor. </div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: large;"><br /></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: large;">
3.<a href="http://www.ncbi.nlm.nih.gov/pubmed/20516426" target="_blank"> Effect of pregnancy on <span class="highlight">postural</span> <span class="highlight">tachycardia</span> <span class="highlight">syndrome</span>.</a> (Mayo Clin Proc. 2010 Jul;85(7):639-44. Epub 2010 Jun 1.)</span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
</div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<div id="P3">
"RESULTS: Clinical characteristics related to POTS did not
differ between parous and nulliparous women except for disease duration
(parous, 3.7±2.6; nulliparous, 2.1±2.2; <i>P</i><.001). Autonomic
dysfunction did not differ between groups (change in HR on HUT: parous,
42.6±12.0 beats/min; nulliparous, 41.3±10.6 beats/min; <i>P</i>=.39).
Of 116 total pregnancies, adverse pregnancy outcomes were reported in 9%
and maternal complications in 1%. No complication was related to POTS.
There was a trend toward modest improvement in autonomic dysfunction
before and after pregnancy (change in HR on HUT: before pregnancy,
38.1±22.7 beats/min; after pregnancy, 21.9±14.9 beats/min; <i>P</i>=.07).</div>
<div id="P4">
<br /></div>
<div id="P4">
CONCLUSION:
The long-term impact of pregnancy on POTS does not appear to be
clinically important. However, there does appear to be a trend toward
improvement in the short-term postpartum period. Adverse pregnancy
events were similar to those seen in the general public and do not
present a barrier to women with POTS who want to have children."</div>
<div id="P4">
<br /></div>
<div id="P4">
<b>Summary:</b> Mayo reviewed 116 patients, and POTS patients have the same statistical risks and outcomes as non-POTS patients regarding pregnancy and delivery. After pregnancy, a majority of the POTS patients reviewed felt better.</div>
</div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: large;"> </span></div>
<span style="font-family: Georgia,"Times New Roman",serif; font-size: large;"><br /></span>
<br />
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: large;">
4. <a href="http://www.ncbi.nlm.nih.gov/pubmed/19659618" target="_blank">Outcomes of <span class="highlight">pregnancy</span> in patients with preexisting <span class="highlight">postural</span> <span class="highlight">tachycardia</span> syndrome.</a></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: large;">(Grubb, et al, Pacing Clin Electrophysiol. 2009 Aug;32(8):1000-3.)</span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
</div>
<div style="font-family: Georgia,"Times New Roman",serif;">
"CONCLUSION: </div>
<div style="font-family: Georgia,"Times New Roman",serif;">
Based on our observation, patients with POTS can
safely complete pregnancy if they desire to do so. POTS should not be
considered a contraindication to pregnancy per se."<br />
<br />
<b>Summary: </b> Dr. Grubb reviewed 22 patients, and concluded that it is safe for most POTS women to have children. </div>
<div style="font-family: Georgia,"Times New Roman",serif;">
</div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;"><span style="font-size: large;"> </span></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;"><span style="font-size: large;">5.<a href="http://www.ncbi.nlm.nih.gov/pubmed/18617391" target="_blank"> Anaesthesia for caesarean section in a patient with Ehlers-Danlos syndrome associated with <span class="highlight">postural</span> <span class="highlight">orthostatic</span> <span class="highlight">tachycardia</span> syndrome.</a> (</span></span><span style="font-size: large;">Int J Obstet Anesth. 2008 Oct;17(4):365-9.)</span><span style="font-size: small;"> </span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;">Unfortunately I can only access the abstract of this article, but if you have Type III EDS and POTS, it is worth geting your hands on and getting to your doctor. </span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;">"</span>Abstract<br />
<div class="abstr">
We report the use of regional
anaesthesia for elective caesarean section in a primigravida with
hypermobility type Ehlers-Danlos syndrome (type III) associated with
postural orthostatic tachycardia syndrome. Single-shot spinal
anaesthesia was performed after failed epidural anaesthesia. This
genotype, although generally associated with fewer antenatal and
peripartum complications, is more likely than other types to display
dysautonomia and orthostatic intolerance. This requires careful
management for delivery."</div>
</div>
<br />
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<br />
<b>In <a href="http://stoppotsvirginia.blogspot.com/2012/06/pregnancy-and-pots-experiences.html" target="_blank">PART 2 of this series</a>, I will discuss my second (life threatening) pregnancy and medication options and implications.</b><br />
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<br />Anonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com4tag:blogger.com,1999:blog-7709891692454052883.post-30691393469181122772012-06-25T09:21:00.001-04:002012-06-25T10:09:22.896-04:00Non-Profit Organization Update: How To Get Involved<div style="font-family: Times,"Times New Roman",serif;">
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<a href="http://4.bp.blogspot.com/-6u5j0zTWbr4/T-hwuJ3EftI/AAAAAAAAAxc/grif90xINP0/s1600/hope.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://4.bp.blogspot.com/-6u5j0zTWbr4/T-hwuJ3EftI/AAAAAAAAAxc/grif90xINP0/s200/hope.jpg" width="178" /></a></div>
<span style="font-size: large;">I have mentioned on this blog before that I am co-founding a new Non- Profit. Some things have changed that I wanted to disclose and update you all on. </span></div>
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<span style="font-size: large;"><b>HISTORY OF THIS PROJECT:</b></span><br />
Back in November or so, I had started putting together thoughts and ideas for a new Non-Profit Organization (NPO) that would help improve the situation across Virginia, the DC area, and MD. I had big ideas about how to help people avoid what I have gone though for the last 10 years, but knew I could not do it alone, especially from a bed on a laptop. Part of my vision was uniting all the bloggers and organizations into one happy Dysautonomia awareness family, because everything seems very disjointed and fractured. Well, Team Fight POTS was birthed out of that, and it has been great to work with other bloggers and activists, and hopefully we have helped people along the way. Unfortunately, after reaching out to a few non-profits, not many actual organizations are willing to work together it turns out. Bloggers and frustrated patients, yes - organizations, no. So I decided I would start my own.<br />
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<a href="http://3.bp.blogspot.com/-NK1PLkb1HrM/T-hjW0lUAWI/AAAAAAAAAw0/Q121ialDMXo/s1600/teamfightpots.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="168" src="http://3.bp.blogspot.com/-NK1PLkb1HrM/T-hjW0lUAWI/AAAAAAAAAw0/Q121ialDMXo/s200/teamfightpots.jpg" style="cursor: move;" width="200" /></a><br />
I began with this blog, and Team Fight POTS came shortly after, and in the process met a few folks with the same idea. Originally we tried to work with an existing NPO, but eventually decided to work together on a completely new NPO, Dysautonomia International, which I have mentioned on here before. <br />
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Unfortunately, after lots of hard work and many hours, I resigned and am no longer working with the group Dysautonomia International for a variety of reasons. We have some irresolvable differing issues and ideas about how to best achieve our goals, and I actually am going back to focusing on VA, DC, and MD. The situation here for dysautonomia patients is BAD, and there is a massive lack of resources and public knowledge. That needs to change. That can not be done with a blog alone.<br />
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We already have an amazing group of people to get things started (or continued, actually), and we are filing paperwork and finalizing our web content and team. More details will follow as they evolve. My goal has always been to educate educate educate - and <b><u>empower</u></b> patients to improve their lives. <br />
<span style="font-size: large;"><br /></span><br />
<span style="font-size: large;">So the new non-profit will be called.....drum roll please........</span><br />
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<a href="http://1.bp.blogspot.com/-UX055WRREJE/T-Dz2d5txuI/AAAAAAAAAwo/ARrUlRxMRgw/s1600/plain-life-ring-hi.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://1.bp.blogspot.com/-UX055WRREJE/T-Dz2d5txuI/AAAAAAAAAwo/ARrUlRxMRgw/s200/plain-life-ring-hi.png" width="200" /></a></div>
<b><span style="font-size: large;">Dysautonomia SOS: Searching Out Solutions</span> </b><br />
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The NPO will focus on improving local resources, but will also provide (many free) materials for anyone anywhere with dysautonomia. Our focus will be on the Orthostatic Intolerance disorders: POTS, NMS/NMH, OI, and OH. We will provide basic info on the others. We have BIG PLANS for our region, and helping patients get the treatment they deserve, access to the resources they need, increasing awareness, and raising funds for research. AND FINDING YOUR POTS CAUSE! We hope to work in conjunction with a nationally focused NPO, and we'll see what happens, and few things are in the works.<br />
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We have a great group of volunteers and medical advisers, but are
looking for more help. We are 100% volunteer run, and applying for
501(c)(3) tax exempt status. We are laying out clear cut ideas and
goals so that everyone that volunteers knows where we stand and what we
want to achieve. They include (but are in no way limited to):<br />
<ul>
<li>Focusing on POTS, Syncopal disorders (NMS/NMH,
OI, OH), Autonomic Neuropathy, and finding the underlying causes of these disorders. Providing information of the other forms of
dysautonomia and links to resources,</li>
<li>Empowering and educating patients, caregivers,
medical professionals, and the public by providing credible, medically reviewed
educational materials and solutions for everyday life, available for FREE to everyone online,</li>
</ul>
<ul>
<li><span style="font-family: Symbol;"><span style="font: 7pt "Times New Roman";"></span></span>Providing
free brochures and access to these materials in
doctor’s offices, hospitals, schools, and other applicable public places
across
the VA/DC/MD region (you will be able to order these materials to print
and distribute in your own region outside VA/DC/MD as well),<span style="font-family: Symbol;"> t</span>hus increasing public awareness, decreasing
diagnosis time, and improving treatment options for dysautonomia patients,</li>
</ul>
<ul>
<li><span style="font-family: Symbol;"><span style="font: 7pt "Times New Roman";"></span></span>Funding research, fellowships, new autonomic equipment, and projects that
directly impact and improve the lives of patients in VA/DC/MD, &</li>
</ul>
<ul>
<li><span style="font-family: Symbol;"><span style="font: 7pt "Times New Roman";"></span></span>Working together with the medical community ,
other organizations, and public to provide support and improve the quality of
the lives of dysautonomia patients in our region and around the world.</li>
</ul>
If you are interested in volunteering, even a small amount of time - please <a href="mailto:stoppotsvirginia@gmail.com" target="_blank">email me</a> for a list of positions and needs we have right now, or if you want to receive updates and info on volunteering as it becomes available. <u><b>And you don't have to be in VA/DC/MD or know about Dysauutonmia to get involved!</b></u> I still hope to work with the other organizations out there, I really feel like we are such a large patient population, and we need to unite to get things done, especially regarding awareness and research.<br />
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This may be wishful thinking, but who knows?<br />
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<span style="font-family: inherit;"><span style="font-size: large;">If you would like to apply to be on our Medical Advisory Committee or Board, please email Claire at <a href="mailto:dysautonomiaSOS@gmail.com">dysautonomiaSOS@gmail.com</a>.
Volunteers do not need to be located in VA/DC/MD, as we will be
providing services that aim to help and are available to EVERYONE. </span></span><br />
<br />
Thanks!<br />
ClaireAnonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com1tag:blogger.com,1999:blog-7709891692454052883.post-7011841162864228162012-06-14T20:45:00.002-04:002012-06-14T20:45:45.143-04:00What is POTS - Really, what is it? REALLY?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-cN9ID6O58cU/T9p-r0fdHMI/AAAAAAAAAvg/T0r77bnwz7Y/s1600/flowerpots.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-cN9ID6O58cU/T9p-r0fdHMI/AAAAAAAAAvg/T0r77bnwz7Y/s1600/flowerpots.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flower POTS</td></tr>
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After compiling the <a href="http://stoppotsvirginia.blogspot.com/2012/04/what-is-causing-your-pots-and-why-it-is.html" target="_blank">big long post</a> that will be broken into a few parts about why you need to find your POTS cause, I wanted to discuss what POTS really is. </div>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-4vteFTLNwzs/T9p-5Q6MtEI/AAAAAAAAAvo/OqcahjThoPw/s1600/copperpots.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-4vteFTLNwzs/T9p-5Q6MtEI/AAAAAAAAAvo/OqcahjThoPw/s1600/copperpots.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Copper POTS</td></tr>
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There is so much confusion and debate between doctors, and amongst people on the support groups and blogs. <br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-UN8ZclO7LgI/T9p_Hiee1XI/AAAAAAAAAvw/Tbb9ln-xyEM/s1600/smokedpots.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-UN8ZclO7LgI/T9p_Hiee1XI/AAAAAAAAAvw/Tbb9ln-xyEM/s1600/smokedpots.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This dude smokes POT(S) </td></tr>
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<span style="font-size: large;">So what in the world is POTS?</span> <br />
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You can print this out and bring it to your doctor if they are unaware, or share with anyone who may be confused on the subject. I would recommend only printing what is between the lines, not my silly pictures.<br />
___________________________________________________________________________<br />
<br />
The most recent consensus definition of POTS by most of the lead researchers in the field is this:<br />
<br />
"4.1. Definition: The postural tachycardia syndrome (POTS) is
characterized by a sustained heart rate increment of ≥ 30 beats/min
within 10 min of standing or head-up tilt <u>in the absence of orthostatic
hypotension</u>. The standing heart rate for all subjects is often ≥ 120
beats/min. These criteria may not be applicable for individuals with low
resting heart rates. For individuals aged 12–19 years the required
increment is at least 40 beats/min. The orthostatic tachycardia may be
accompanied by symptoms of cerebral hypoperfusion and autonomic
overactivity that are relieved by recumbency.<br />
<br />
4.2. Pathophysiology: The etiology and pathophysiology of POTS are unknown but are likely to be heterogeneous. The syndrome is associated with deconditioning, recent viral illness, chronic fatigue syndrome and a limited or restricted autonomic neuropathy. The differential diagnosis includes conditions that cause tachycardia, such as thyrotoxicosis, inappropriate sinus tachycardia and other<br />
cardiac rhythm abnormalities, pheochromocytoma, hypoadrenalism, anxiety, dehydration, and medications (e.g., vasodilators, diuretics, and ß-agonists).<br />
<br />
4.3. Epidemiology and clinical features: The prevalence of POTS is not known. The syndrome is more common in women. The orthostatic symptoms consist of lightheadedness, visual blurring or tunnel vision, palpitations, tremulousness, and weakness (especially of the legs). Other symptoms include fatigue, exercise intolerance, hyperventilation, shortness of breath, anxiety, chest pain, nausea, acral coldness or pain, concentration difficulties and headaches. On clinical examination, in addition to the heart rate increment, pulse pressure may be reduced and acral coldness may be present. Continued standing may lead to venous prominence, cyanosis and foot swelling. A hyperadrenergic state is present in some patients who have a resting tachycardia, sweating, and tremulousness."<br />
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Source: <span style="font-size: small;"> <a href="http://www.springerlink.com/content/w7661265484mv820/" target="_blank"><span style="font-weight: normal;">C</span></a><a href="http://www.springerlink.com/content/w7661265484mv820/" target="_blank">onsensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome</a>.<a href="http://www.blogger.com/goog_1989321970" style="color: black;" title="Autonomic neuroscience : basic & clinical."> </a><a href="http://www.blogger.com/goog_1989321970" style="color: black; font-weight: normal;">Freeman R</a><span style="font-weight: normal;"> et al. , </span>Auton Neurosci. 2011 Apr 26;161(1-2):46-8. Epub 2011 Mar 9. </span><br />
<span style="font-size: small;"><br /></span><br />
<span style="font-size: small;">Here is the complete list of contributors: Roy Freeman, Wouter Wieling, Felicia B. Axelrod, David G. Benditt, Eduardo Benarroch, Italo Biaggioni, William P. Cheshire, Thomas Chelimsky, Pietro Cortelli, Christopher H. Gibbons, David S. Goldstein, Roger Hainsworth, Max J. Hilz, Giris Jacob, Horacio Kaufmann, Jens Jordan, Lewis A. Lipsitz, Benjamin D. Levine, Phillip A. Low, Christopher Mathias, Satish R. Raj, David Robertson, Paola Sandroni, Irwin J. Schatz, Ron Schondorf, Julian M. Stewart, J. Gert van Dijk</span><br />
<span style="font-size: small;"><br /></span><br />
___________________________________________________________________________<span style="font-size: small;"> </span><br />
<br />
<span style="font-size: small;">So - that is only what all these various researchers with all the differing definitions of POTS agreed upon. There are a few big names missing, like Dr.'s Grubb and Mathias, but this seems to be some sort of effort to come to an understanding of the minimum requirements for a POTS diagnosis, and to get the point across that blood pressure (BP) changes are not a requirement, and even includes the statement that POTS only occurs in the absence of a blood pressure drop. This still confuses me, because my understanding was that you can have POTS <i>and</i> orthostatic hypotension or NMS. I'm going to hypothesize that they are finding in patients with the drop in BP, it is a sign of something else going on, and doctors need to dig deeper than the typical causes of POTS. Or that "everyday doctors" that don't specialize in dysautonomia were ruling out POTS without a drop in BP. I plan to email a few of these doctors for clarification, hopefully someone will respond! </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-NUvuJjcQwbg/T9qCEhYpMbI/AAAAAAAAAwU/YKuF56xlDCY/s1600/POTS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-NUvuJjcQwbg/T9qCEhYpMbI/AAAAAAAAAwU/YKuF56xlDCY/s1600/POTS.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The majority of POTS patients: good looking, young women. Who are told they have anxiety. </td></tr>
</tbody></table>
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<span style="font-size: small;"><span style="font-size: large;"><b>Summary:</b></span> </span><br />
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<br />
<span style="font-size: small;">POTS is a syndrome (a collection of symptoms, not a disease). If someone's heart rate increases at least 30 beats per minute (BPM) when standing, many times above 120 BPM, within 10 minutes, that is POTS. Some of the symptoms are relieved once laying down, but many are chronic and mimic other conditions. It has many causes, and affects mostly women. Certain dangerous conditions that mimic POTS or coincide with POTS need to be ruled out.</span><br />
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<span style="font-size: small;">POTS does not include, by defintion, any changes in blood pressure, those are separate disorders. In fact, in the consensus statement, they say that you only have POTS in the absence of a drop in blood pressure. So if your doctor tries to tell you that you are fine and it's just anxiety because your blood pressure didn't drop, or because you are a young, healthy looking woman, show them the above statement, along with <a href="http://stoppotsvirginia.blogspot.com/p/letter-to-doctors-regarding-anxiety.html" target="_blank">this statement</a> about the difference between anxiety and POTS (and maybe get a new doc!). </span><br />
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<span style="font-size: small;">See the post regarding <a href="http://stoppotsvirginia.blogspot.com/2012/05/fainting-final-frontier-and-neurally.html" target="_blank">Syncope and Neurally Mediated Syncope</a> for more details on disorders related to dropping blood pressure and fainting.</span><br />
<span style="font-size: small;"><br /></span><br />
<span style="font-size: small;"><br /></span><br />
<span style="font-size: small;"><span style="font-size: large;">As a side note - </span>this was the first listing in Google when I typed in POTS, of course from that most reliable of sources, Wikipedia (insert sarcasm):</span><br />
<h1 class="firstHeading" id="firstHeading">
<span dir="auto">POTS</span></h1>
<div id="siteSub">
From Wikipedia, the free encyclopedia</div>
<div class="mw-jump" id="jump-to-nav">
Jump to: <a href="http://en.wikipedia.org/wiki/POTS#mw-head">navigation</a>,
<a href="http://en.wikipedia.org/wiki/POTS#p-search">search</a>
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<table class="metadata mbox-small plainlinks" style="background-color: #f9f9f9; border: 1px solid #aaa;">
<tbody>
<tr>
<td class="mbox-image"><img alt="" height="40" src="http://upload.wikimedia.org/wikipedia/commons/thumb/f/f8/Wiktionary-logo-en.svg/37px-Wiktionary-logo-en.svg.png" width="37" /></td>
<td class="mbox-text">Look up <i><b><a class="external text" href="http://en.wiktionary.org/wiki/Special:Search/pots">pots</a></b></i> in Wiktionary, the free dictionary.</td>
</tr>
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<b>POTS</b> may refer to:<br />
<ul>
<li><a href="http://en.wikipedia.org/wiki/Plain_old_telephone_service" title="Plain old telephone service">Plain old telephone service</a>, basic wireline telecommunication connection
<ul>
<li><a href="http://en.wikipedia.org/wiki/POTS_codec" title="POTS codec">POTS codec</a>, a digital audio device</li>
<li><a href="http://en.wikipedia.org/wiki/DSL_filter" title="DSL filter">DSL filter</a>, also known as a POTS filter</li>
</ul>
</li>
<li><a href="http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome" title="Postural orthostatic tachycardia syndrome">Postural orthostatic tachycardia syndrome</a>, a medical condition</li>
<li><a href="http://en.wikipedia.org/wiki/Poverty_of_the_stimulus" title="Poverty of the stimulus">Poverty of the stimulus</a>, an argument in favor of innate grammar</li>
<li><i><a href="http://en.wikipedia.org/wiki/Protector_of_the_Small" title="Protector of the Small">Protector of the Small</a></i>, a series of fantasy novels</li>
<li><i>The Path of the Shell</i>, an expansion pack of the computer game <i><a href="http://en.wikipedia.org/wiki/Uru:_Ages_Beyond_Myst" title="Uru: Ages Beyond Myst">Uru: Ages Beyond Myst</a></i></li>
<li><a href="http://en.wikipedia.org/wiki/Pacific_Organized_Track_System" title="Pacific Organized Track System">Pacific Organized Track System</a>, airways between Japan/Southeast Asia and the US mainland</li>
<li><a class="mw-redirect" href="http://en.wikipedia.org/wiki/Plain_old_television_service" title="Plain old television service">Plain old television service</a>, or over-the-air TV</li>
</ul>
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<span style="font-size: large;"><b>Oh, and this guy IS SO NOT POTS:</b></span></div>
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<a href="http://3.bp.blogspot.com/-o3BkFv_1Yq4/T9qEI93H7OI/AAAAAAAAAwc/2DZJ-y0LDP4/s1600/Grinch.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-o3BkFv_1Yq4/T9qEI93H7OI/AAAAAAAAAwc/2DZJ-y0LDP4/s1600/Grinch.png" /></a></div>
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<ul>
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Also, here are some POTSies, which came up in my Google search as well:<br />
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<a href="http://3.bp.blogspot.com/-q6KY6cLpIs4/T9qBpMrDRmI/AAAAAAAAAwE/3TVvFKRW6k0/s1600/potsy2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-q6KY6cLpIs4/T9qBpMrDRmI/AAAAAAAAAwE/3TVvFKRW6k0/s1600/potsy2.jpg" /></a></div>
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<a href="http://4.bp.blogspot.com/-6wxf7M6a_VQ/T9qBob_5R_I/AAAAAAAAAv8/BjMSsLCsvfg/s1600/potsy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-6wxf7M6a_VQ/T9qBob_5R_I/AAAAAAAAAv8/BjMSsLCsvfg/s1600/potsy.jpg" /></a></div>
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<a href="http://2.bp.blogspot.com/-ymEkQ9h3ExU/T9qBp7GQzrI/AAAAAAAAAwM/sTGw9DSmS38/s1600/potsy3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-ymEkQ9h3ExU/T9qBp7GQzrI/AAAAAAAAAwM/sTGw9DSmS38/s1600/potsy3.jpg" /></a></div>
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<span style="font-size: large;">And if you haven't seen it, here is a PG-13 video I made about the ER experience for a POTSy called "What the hell is POTS?":</span><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/lg7YvKousDM" width="560"></iframe>
<span style="font-size: large;"> </span> <br />
<br />
Until next time POTSy dudes and dudettes.<br />
ClaireAnonymoushttp://www.blogger.com/profile/16623393323807331606noreply@blogger.com0