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