About Me/Contact Info

***Update as of June 2013. I am currently dealing with a decline in my health, and am no longer using the STOP POTS email. I need to take some time off from chatting with you all to focus on my health and spending time with my family, as well as Dysautonomia SOS. Thanks for your understanding. Please see our Support Groups page, and reach out to others through that many groups available online.   

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Not trying to be narcissistic, but I figured you may want some background info on the creator of this site.  So here it is:

As of January 2012, I am a mother of 2 and a wife of 1. My son is almost 4, and my new daughter is 4 months old. Right now they are my world, along with my husband, because I am homebound - and often bedbound- due to POTS and a slew of other fun medical issues. My educational background and passion is marine biology.  I worked in a number of research labs while at my University, co-authored and wrote for scientific journal publication, and aas a paid scuba diver in the Keys during a stint in graduate school with every intention of getting my doctoral degree before having to leave mid semester when I first started having tachycardia and dizzy flares (in 2002/2003).   I eventually found out that I had come down with the "rarely known" disorder POTS, and had to cut back on the manual labor and stress, (working on a thesis project based entirely on an underwater resaech site doesn't go well with heart problems and passing out) so I started teaching high school science.  That ended up increasing the manual, emotional, and mental labor and stress, and I had to leave after a few years when my illness flared up dramatically in 2005/2006.


I then figured I'd pursue my other passion - art and design - and opened a floral design business (Bella Flora).  Once again, I thought this would decrease my stress level and be relaxing and therapeutic, "Ohhhhh, arranging flowers must be so fun and relaxing" is all I have heard for years.  Well - WRONG.  Owning a business is stressful in itself, then factor in dealing with brides, the craziness that is Valentine's Day, and insane work hours because the product you're selling dies quite quickly, and you have STRESS. And lots of it.  Don't get me wrong, I love (and am pretty good at) floral design and design in general, it's just a lot of work and stress.  I've kept my old blog as a portfolio, and use it now to raise awareness as well (you may see some duplicate articles between the two sites). 

I had a period of non-POTS heaven while pregnant with my son, and while I was nursing him - lasting almost 2 years until symptoms began to flare dramatically again.  My business had taken off, and was VERY stressful, and I was on my feet chasing my munchkin and running my shop, and was trying to handle new and old symptoms that decided to pay me a visit again.   This became too much.  My family has always come first, I was lucky enough to have a nanny and a room in my shop set up so my son was with me and not in daycare most of the time for his first few years.  But my symptoms continued to increase, until I had to move my shop and get rid of the retail portion and focus on weddings only.  I had just relocated to a new showroom and added a linen rental line to my business, and had our biggest most successful year to date.  But I was overworked, massively POTSy feeling, and not able to devote all the time needed to Bella Flora because I refused to miss out on time with my son and husband and struggled with my health.  I could work a 16 hour day setting up a huge event, but would crash and get physically ill afterwards.  There was a couch in my showroom, and LOTS of seating options :)

Then, in an attempt to get into a business where we could work smarter, not harder...I was in the process of opening an event venue for weddings, events, music, art shows, etc... with a partner, and we had an incredible investor, a great location, and had booked about 20 weddings/events - when it all crashed because of a slime ball landlord that lied to us about permits.  So that equals STRESS.  This overlapped with me being hospitalized for most of 2011 and having to close the aforementioned businesses, almost dying from blood clots and embolisms related to a PICC line, and almost losing my daughter during a crazy pregnancy (thankfully she made it through unscathed). More stress. So basically I subconsciously love stress.  Did I mention that I can be quite silly and sarcastic too?  Well, now you know!

I previously stated that I am home-bound at this point, and that is due to my pregnancy in 2011, which I am still recovering from.  I was in bed for 9 months, almost all of which was spent in the hospital.  I'm in the process of writing about it in detail in the series POTS, Clots, and Closing My Successful Business.  Dealing with multiple hospitals, doctors, nurses, insurance, and the general non-knowledge of how to be treated when you have POTS has inspired this site.  I hope to help others avoid what happened to me, because it almost killed me, and now I am non-functioning as a result of bad medical practices by mostly well meaning, but ignorant doctors.  My daughter was born health, happy, and is gorgeous, and we hang out all day at home while my husband works and my son is in preschool. 

I love hearing from and connecting with others - feel free to contact me about the site, with questions, suggestions, or anything else as long as it's not spam :)  Find me on Twitter and Skype as @Eklayre, or shoot me an email at stoppotsvirginia@gmail.com.

We also have a Team Fight POTS collaborative facebook site that I organized linked in with other great facebook sites and bloggers dealing with POTS, so go like us!

I hope you enjoy the blog!

 

21 comments:

  1. Thank you so much for this site. My brilliant, beautiful daughter has struggled with undiagnosed POTS from about age 10. It worsened during her stressful college years, and we finally got a POTS diagnosis her junior year by going to Vanderbilt Medical Center. She barely managed to graduate from college, due to her POTS, and has lived at home with us, incapacitated, ever since. We continue to struggle with her health, and have found a good specialist (only 8 hours away...), but he has POTS, too, so it's a challenge. Anyway, your website is one of the best we've found. Keep up the good work, and God bless you.

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  2. Hi and I am so grateful to find your blog! I live in Richmond VA and have been diagnosed with POTS physiology. I think I may have what is called Mitral Valve Prolapse Syndrome as I do have MVP with moderate regurgitation. Anyway, it is still dysautonomia and I have the same type of symptoms. I look forward to reading your entire site. THANK YOU!!

    Angela

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    1. Angela, hopefully you found our VA Facebook group, here's the link:

      https://www.facebook.com/groups/DPAS4VAMDDC/

      There are some great doctors in Richmond treating POTS, I hope you have found them. Thanks!

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  3. in Sept 2009 my son had swine flu after several weeks we realized something else was wrong and like others it took 3 years to get a diagnosis of POTS! I would like to try and start an area support group I am in Winchester VA area any ideas, thank you again for this site!!

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    1. Hi Eileen,
      Email me at DysautonomiaSOS@gmail.com, I will help you with some ideas for starting a support group - and thank you for your willingness to do so! We need more!
      ---Claire

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  4. I have been diagnosed with POTS 2 months ago but have had all the symptoms and went undiagnosed for 11 years. I am thankful for your blog because it makes me feel like I am not crazy and alone. I have been on bed rest for the last 3 months and my neurologist just told me he can't treat me anymore. Although I can't use the list of doctors you have because they don't take my insurance it gives me hope that there are doctors out there that can help. We are military and we are living near Alexandria, VA. Thanks so much for sharing your story.

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    1. Have u tried VCU in richmond Dr.sica is a great doctor.

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  5. I live in VA beach and recently diagonised with pots and autonomic neuropathy syndrome.I am having a hard time dealing with it.i was wondering if there are any local support groups??

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  6. I would love to chat with you and get your opinion kaycies.cakes@hotmail.com

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    1. I no longer have stop pots emails, as is explained in my last post because I am bed bound and very sick right now.

      The nonprofit wrist bands take 1-2 weeks to process and ship. Our volunteers will be mailing a batch shortly I'm told. I'm not sure what's going on with the info@ email, I will check. Thank you.

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    2. Thank you so much for your attention, I do appreciate it. I am so very sorry for your decline in health. I completely understand, as I too am a sufferer.

      Anne

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  9. Hi there,

    I am a massage therapist and pain management specialist. Today a woman suffering from POT syndrome came in to my office and described some of her symptoms ( dizziness, fainting, high heart rate) One of the products I use in my practice is an adhesive patch called AEON, which is designed to balance the autonomic nervous system in short order. I gave her the patch and she stood for the first time in 21 years without dizziness or high heart rate. We will be keeping an eye on her progress. If you want to know more, please contact me at www.massagetherapistchesapeake.com

    Blessings.

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  10. Claire. Sorry to hear of your decline in health. I see to that it has been a while since you've last written and cancelled your email. I've really enjoyed your site and found it to be the most informative site out there. Thank you. I've been struggling for a long time and had my first bout of tachycardia and tremors in 2009. Recently, 2016, I have been diagnosed with POTS after seizures, slurred speech, inability to walk, slowed cognition, dizziness, etc. Like you, I felt great being pregnant and nursing. I have been to sick to have a second. Over the years a number of different things have helped. Clearing goiters off the thyroid, correcting the adrenals, therefore balancing the endocrine system. Then stool analysis of heavy metals and oral chelation of them and then stool analysis of bacteria and hemeopathic remedies to clear them and restore beneficial bacteria. After each time I'd feel better for a year or so and then move onto the next thing. All the time, with the help of a private healthcare provider because "none" of the western docs could tell us what was happening. After my most recent and severe crisis, during a time of high "high" stress, where I had seizures and problems with mobility and cognition a homeopathic protocol to increase mitochondrial production of ATP got me back on my feet. Again, I had goiters on the thyroid and my adrenals were off. After taking a month of remedies for that I am feeling even better. More recently, I've also been getting NUCCA chiropractic adjustments which has cleared up the dizziness. It is hard to hold though because I also have a problem with my cecum/large intestine being prolapsed and causing pelvic congestion, ( which in my mind could be whats causing circulation problems) and continually pulls at my back. T12. Worse during ovulation and menstruation. I believe that the intestinal problem is at the root of it all but having complaints about that since before 2009. I've had a really difficult time with the docs with it because they all tell me to take laxatives to empty it. I can empty it only for it to fill again 6 hrs later. I have finally found a GI doc who said it would be worth doing a colonoscopy. (However, but he think the POTS is unrelated. ! ) If you're thinking I am dont eat well and am constiipated, that is not the issue. I do eat really well. Along with the POTS advancing this last year I have also developed lots of food allergies and my antibodies are not working as they should. My private healthcare doctor believes this is the root of the problem. Its been a long long journey and these are some of the things that have helped me. I believe POTS is rooted in intestinal health, which is effected in a number of different ways and creates problems that domino throughout the body systems. I hope that wha I have learned and what has helped me can shed some light and help for others. I hope you get this Claire. Wendy

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  12. Thank you for this amazingly helpful and informative website. I was diagnosed with POTS a year ago and am still experiencing so much anxiety about my heart symptoms which seem to be getting progressively worse (tachycardia with small movements, PVCs etc). I can tell that as I am a young female, doctors brush me off as a hypochondriac - but when your pulse shoots up into the 100s just from standing up there is something definitely wrong! Your website has made me determined to find the root cause of my POTS and make sure I get all of the cardiac tests to rule out any other conditions. I really appreciate all of the work and research that has gone into this site - it has helped me to make sense of this weird condition and made me feel less alone, so thank you. You seem like a strong and inspirational person and I hope you're now getting some relief from these rubbish symptoms. Take care, Mari x

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    1. Dear Mari,

      Yes, as a young woman doctors treat you like a hypochondriac, or someone who has any other "mental" condition, one who needs attention, one who is wasting their time when they could be seeing a patient with a "real" medical complaint, etc.

      I have seen dr after dr over 30 years being treated exactly like that, even last week in a cardiologist's office and in the ER where my pressure as yours with a diastolic number of 100 even upon discharge.

      The cardiologist told me "Well, since you have an orthostatic problem, there is no need to take the Tilt Table Test, you might faint during the test" Keeping my reply clean I won't say what I thought of this dr.

      They found nothing wrong in the ER - I was there for 7 hours, the explanation for my high blood pressure was that "maybe it's high because your in the ER" I went there because It was high, I had chest pains an unforgiving headache, tingling in my left arm and left cheek.

      I've had a left bundle branch block (left side of my heart, the electrical system doesn't work) with ekg readings that over the years have added abnormalities on them, narcolepsy (sleep study tested), I have every general POTS symptom and they've been getting substantially worse in the past few months, and I'm the hypochondriac...

      My conclusion; doctors are a dime a dozen and one must really research to find a good one out of a sea of judgmental quacks. Of which after 30 years and a life destroyed by this (I'm for the most part couch bound at this point), I have finally found a good one. For anyone in the area, the Neurologists at Columbia on W.168 St (NYC), will take you seriously.




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    2. I'm so sorry for your experiences - especially so as I relate too well... I hope things begin to look up for the lot of us ❤❤

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    3. I'm so sorry for your experiences - especially so as I relate too well... I hope things begin to look up for the lot of us ❤❤

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  13. I have made great success with eliminating my POTS symptoms seeing a NUCCA therapist here in Franklin Tennessee. Dr. Hall. On my second last visit, I walked in on the verge of having another "episode" (blood pressure change, heart racing, etc.) and the adjustment literally settled everything down! I am so very excited and pleased about this. This is a link to their website and you can see if there is a therapist near you. http://www.nucca.org/ Not all therapists are the same, from my experience, you don't want one that does the same adjustment over and over, you want one that wants to listen to how it makes you feel, and try different adjustments and tweaks as you go along to accommodate you. What I may be discovering here is that my neck alignment has been thrown off from an old swimming injury in my right shoulder. This to is about the time in which I started to feel a decline in health. Very interesting. All the best to you.

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