New Autonomic Clinic Opening in Norfolk, VA (NEAR ME!)

So for any Virginians (and other East Coaster's) that haven't been able to get a full autonomic work up - I have great news!  (Insert happy dance while seated!)

I met with Dr. Chemali, who just came to Norfolk, VA from the Cleveland Clinic, and specializes in Dysautonomia, and has worked with some of the best minds in the field.  As we all know, Mayo, Vanderbilt, and Cleveland Clinic are where you go to get quality autonomic testing done.

Well, he is opening a full lab right here in Norfolk!  It will be located in the new Heart Hospital of Sentara Norfolk General.  My understanding is that it will be fully up and running in September.

This is a God send for me, and I think many others.  There is a SERIOUS shortage of proper equipment to diagnose Dysautonomia in Virginia, and even more so there is a shortage of specialists. Some facilities may have a few tests they can run, but their doctors don't really diagnose and treat the big picture that is dysautonomia.   I was shocked when Hopkins had no one to help me while I was there.

My hope is that Chemali will train up a few doctors and get the ball rolling, or maybe bring in another specialist or two, and start seeing patients and doing clinical trials/research like crazy.

Here is a link to Dr. Chemali and the Neurology Group's Info.   No one else in his group treats dysautonomia of any sort (I've seen a few - don't bother), so make sure you ask for him.  His nurse and the staff are very nice.  This is very exciting!

Now; a quick illustration/exploration of various happy dance options (modified to work with your POTS of course):

the nun happy dance

the Calvin and Hobbs happy dance

the robot with no arms happy dance

the cool turtle happy dance

the all time classic Snoopy happy dance

Hope everyone is having a great and unPOTSy day!
--Claire

What The Hell is POTS?

I made this based on a pole of the experiences of POTSies in the ER, and hopefully as a funny educational tool.  It is a bit PG13, the only bad language is "freaking" and "hell" said many, many times.  Feel free to share.  Enjoy!

Skype Meet Up Tonight! 8PM EST

Hello VA/DC/MD (and beyond!) POTSies!

Tonight is our first try at a Skype meet up!  Until we get enough people participating that we can split up geographically - I opened this up to anyone anywhere affiliated with POTS - including parents, caregivers, etc...

In order for you to participate, I need you to send me a contact request so I can add you to the conference call group "Team STOP POTS".

Here's how to do this:

1.  Get a FREE Skype account at www.Skype.com

My Guest Post of Living With Bob: Staying Sane With A Chronic Illness

I was honored to have this article published by Rusty Hoe on her popular blog - that I adore - Living with Bob (Bob is Dysautonomia).

 If you haven't checked it out, you should!  Her writing and sense of humor dealing with this maddening disease are amazing.

Monday, 12 March 2012

No Need For Padded Walls: Staying Sane With Chronic Illness

Fourteen , count 'em - FOURTEEN - months either at home or in the hospital/doctors offices for me, with no social outings.  And I'm not the only one, or even close to the one with the longest record of time spent indoors.  I had been feeling a bit overwhelmed by the lack of outdoor time, and constant focus on my illness, my kids (with no break), and searching for ways to get better.  Life is about balance (insert "oooommmm" yoga zen breathing pause for effect here).  Even if you are not completely bed or home bound such as myself, you may be severely limited by your illness, and going a bit bonkers being indoors more than the average healthy person, not to mention being sick.

 

So how the heck do we all stay sane?  I REALLY want to avoid the padded walls of a psych ward, even though the padding wouldn't do much good - as I can't walk far enough to run into them.  Padding on the floor would be great though, in case of random face planting incidents. And as sexy as helmets can be - I'm trying to avoid those too.  But just in case, here are a few stylish options, for those of you that unintentionally share my love of hugging the floor and have a fear of the sharp hard edges found in bathrooms:

From Battling the Grinch, to Battling the Bulge; Cooking Healthy for a Month

This is going to seem really tame and maybe boring after the excitement of the last week or two with the "Battle of the Grinch" as I've come to call it. By the way,  Dr. Levine (who coined the term Grinch Syndrome) wrote a response to the excellent article on About.com about POTS and the Grinch controversy, featured here.   Levine danced around the issues, and you can see my thoughts in the first comment listed if you care to.

From "Battle of the Grinch" to "Battle of the Bulge," and I do like a dramatic transition - I have been struggling with blood sugar swings, and eating out of a cooler of pre-made/pre-packaged food daily that my husband kindly puts together for me (I can't sit up long enough to make food or last long enough in the kitchen to prepare anything).  Add to that being gluten intolerant, having random anaphylactic reactions to foods/smells (possible MCAD), and you have a recipe for linited and fearful eating habits. Not to mention fat thighs and a post baby belly that looks like my daughter could still live in there at 6 months old.  My son actually told me I have a big butt tonight.  He was being silly, but kids don't lie!  Talk about a reality check.

The ABC News Aftermath; Junk Reporting and THE GRINCH Making Life Harder for POTS Patients

As many of you in the Dysautonomia community know, ABC recently aired a segment on World News Tonight with Diane Sawyer about POTS (on 2/29/12).  Leading up to that broadcast, a series of events took place that amazed me and reinvigorated my faith in the power of patients as a community.  We mobilized.  We complained. We used every connection we could.  And it worked - sort of.

Here is a breakdown of the history of, and problem with "The Grinch Syndrome", along with a timeline of what took place over the last week.  I also include a call to action (once again) from our amazing POTS warriors to force change that is long overdue.  

THE GRINCH PROBLEM

There is a researcher out of Texas named Dr. Levine who proposed that POTS be renamed The Grinch Syndrome.  He did this based on his study that was published in the Journal of American College of Cardiology in 2010 called Cardiac Origins Of The Postural Orthostatic Tachycardia Syndrome. The presumptuous name of the study is the first clue as to how preposterous this "study" and its "conclusions" are.  Levine and his researchers claim that, "These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective non-drug therapy for POTS patients."

I am not a GRINCH!

ACTION ALERT-Tell ABC NEWS Not to Disrespect POTS Patients

Last night (2/28/12) ABC World News with Diane Sawyer did a segment on Cardiogenic Syncope. They showed a preview clip of tonight's segment with fainting astronauts, and we know that is going to be about POTS(Postural Orthostatic Tachycardia Syndrome).  Fellow POTSy (POTSGrrl) called ABC News tonight and spoke with the reporter who prepared the POTS/astronaut story.  Claire from STOP POTS called as well, and spoke with the reporters assistant.

Stand Up POTSies - You DO look sick!

Spoons = Energy.

So I was discussing the whole "invisible disability" and "but you don't look sick" labels/movements with someone the other day, and it made me think about the whole issue in terms of POTS.  I'm on board with supporting the Spoonie movement, as it explains how us POTSies and Dysautonomia folks have to delegate what to spend energy on, and is a great analogy to send to friends and family about our condition.  But I feel labeling our condition as invisible is not accurate.

Many people with POTS and dysautonomia are young, and do not have apparent or obvious deformities. This does not equal not looking sick, or being invisible.   

Identitiy Crisis: Causes of POTS and Dysautonomia Unknown?

Well, I am once again on the hunt.  But this time is different, and the stakes are higher.  I have had POTS now since the end of 2002, with many ups and downs, but always managed to bounce back, or push through.  I had a few fairly bad spells where I was told I "just have POTS", and was given meds (or not), and basically told to just deal with it.  I was constantly given the run around by local doctors, and got burnt out on the constant scoffing, anxiety blaming, or being passed on to yet another specialist because they didn't want to deal with my issues.  So this is partially my fault - I should have kept pushing, even though the process is hard to maintain while trying to live, and it gets exhausting.

My health had been declining in 2009 and 2010 with the increased stress in my life (business related), and leaving all of these health issues untreated and unchecked for so many years while working in my typical type-A fashion was catching up with me.  Then I got pregnant in December of 2010 with our second child, and I have been mostly bed bound, and completely hospital or home bound, ever since.  I like to call it, "POTS gone wild".  I go everywhere by medical transport.  I cannot tolerate more than one or two minor activities, even if seated with my legs elevated, per day.  I barely can cope with caring for my infant daughter, and am constantly pushing my health boundaries to play with my preschool aged son.  It has been 14 months since I left the house to do anything social, anything other than be hospitalized (for over 9 months total) or go to a doctors appointment.

Why do I mention this?  Because I truly believe that if someone had found the cause of my POTS, and if I had made it more of a priority, even though I was functioning at a moderate level, I would not be in this situation.

So I am now on the hunt for answers, and have been searching the medical literature and any credible resources I can find for ALL the causes of POTS, and I am demanding to be tested for ALL OF THEM.  

And so should you.

"Idiopathic POTS", in my not so humble opinion, is an idiotic notion.  It means that the cause is unknown.  I have had many doctors tell me that some people "just have POTS".  What a load of crap.  Something is causing my heart rate to go up at least 30 beats per minute when standing.  Something is causing me to pass out or have near-syncope events after a few minutes (if I'm lucky).  Something is causing all the terrible effects and symptoms of POTS that we all experience, and that certain SOMETHING may be a serious underlying disease or health condition.

The problem in diagnosing the cause of POTS is that there are only two main centers that contain a sufficient array of specialists across all of the medical fields that encompass the multitude of possible causes of POTS - and that even know anything about POTS.  The Mayo Clinic in Rochester, and Vanderbilt University in Nashville.  That's it.  In all of America.  The Cleveland Clinic is fairly well known too, but most people in the autonomic world say go to Mayo or Vandy.

Thankfully, I have an appointment scheduled in July for Vanderbilt.  It has been scheduled since November.  That is a 9 month wait.  Unacceptable.  The wait for Mayo is even longer, as is the wait to get in to see the famed Dr. Grubb (over a year), who has published loads of articles on POTS.   There are so few actual POTS specialists, and so many POTS patients, that we are all waiting ridiculous amounts of time to be seen.  Locally, all the specialists that could diagnose what is causing my POTS are completely spread out, and many times they don't and won't talk to each other.  And they only specialize in their specific field or study, and may miss something, or pass me off to yet another doctor.  I am trying to find some answers locally in the mean time, to avoid the 12 hour car ride to Vandy, and avoid continuing in this state for another 5 months, but it's not looking good.

Why only two centers?  This baffles me.  It baffles me more so because I have learned how common POTS and Dysautonomia are.  Part of the problem is that most of the public and the medical community does not know anything about POTS or Dysautonomia.  It's a ridiculous notion, when a low estimate is that 500,000-1,000,000 people are living with POTS, and I'm not even sure what the current stats are for Dysautonomia in general.  So POTS by definition is not rare.  It is more common than MS, Parkinson's, and Autism (stats cited in this post).  But you can go to any decent sized city and find multiple doctors that treat all three of those other diseases.

As mentioned previously, POTS can be caused by diseases affecting a number of of the bodies systems.  This makes being a POTS specialist tough.   This is why we usually get passed from doctor to doctor in a variety of specialties. They include (but are not limited to): Cardiologists, Neurologists, Endocrinologists, Rheumatologists, Allergists, Immunologists, Gastroenterologists, Hematologists, Dermatologists, and even Ophthalmologists.    

THIS IS A PROBLEM!

The many bodily systems possibly affected by Dysautonomia and POTS.

POTS has an identity crisis. Is it autoimmune?  Is is post viral?  Is it EDS?  Is it a problem with your aldosterone?  Maybe, maybe, maybe, and maybe.  All of those possibilities (and there are many, many more), would require the specialized knowledge of at least three different doctors.  And therein lies the problem. 

So my idea, for a long time, has been to compile all the possible causes of POTS, checklist style, with a diagnostic guide for patients (and maybe doctors) to use to find answers.  I am a firm believer that before saying the cause of your POTS is unknown - or "idiopathic" - you, and any responsible doctor, must exhaust all options.   However unlikely based on your presenting symptoms, the fact that you have POTS means you should be tested for all the known causes, until one comes back positive.  They should be ranked in order of prevalence, and broken down by symptom groupings.  If all of the known scientific causes come back negative, then fine - the science isn't there yet, but my feeling is that most doctors don't even know what this list consists of, except maybe at the two big medical centers I mentioned.

I firmly believe that the key to getting the best treatment is empowering yourself with the most knowledge possible.   This is a BIG project (for me alone at least).  But how many people have died of the underlying disease causing their POTS?  We don't know.  I always hear that POTS is not fatal.  But untreated autoimmune diseases can be, as well as certain forms of mastocystosis. Both cause POTS. We don't know how many people are misdiagnosed, and miss out on years of their lives, when things may have been different with the correct treatment.

I do know that I am not the only one stuck in my house, in a wheelchair, waiting for answers.

So I am starting this list, and this may be a long project, but someone has to start.

If you would like to be involved in this project, and/or a number of others - please contact me.  I am working with NDRF in a large expansion and website revamping of the charity, and we need your help.  We can not continue to live with poor quality of life, stuck indoors, waiting on the few doctors that know about POTS to see and treat us.  We need to educate ourselves, the public, and the medical community about this disabling illness that is not "idiopathic", and we need to find the cause for our own POTS.  We need to team up, as a community, and let the medical professionals know that we are not idiots, we are people, and we are educated, and we want answers and treatment.

---Claire

How to Understand Someone With Chronic Pain: 12 steps (with pictures) - wikiHow

How to Understand Someone With Chronic Pain: 12 steps (with pictures) 

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are some things that can help you to understand, and help, people who suffer from, often debilitating, chronic pain.