If you suspect you have POTS or if you already know you have it and you're not having any luck finding a doctor who can help you, please do not give up.  Some people have been diagnosed with POTS after 14+ years of passing out and not knowing why.  There are not enough doctors who specialize in POTS to treat all of the people who have it.  Some of the best experts have a three year waiting list.

It took me 9 months to get a diagnosis and that is actually pretty fast compared to other people.  I went to over 30 different specialists, I had dozens of Emergency Room visits, and I ended up being admitted to the hospital three different times, to five different hospitals (for a total of 3 months in the hospital in one year) and NO ONE, not even the big shot neurologists, cardiologists and medical school professors I consulted with could figure me out.  I misdiagnosed with all sorts of ridiculous diseases - neuroendocrine cancer, croup, bronchitis, pleurisy, panic attacks, etc.  I didn't have any of those things.  Seriously, when is the last time bronchitis caused someone to lose 60 lbs. and pass out every day for months on end?

I found out about POTS on my own through internet research.  I printed out several journal articles on it from Mayo Clinic and then asked my neurologist if I could have it.  It just seemed to fit my long list of symptoms.  My neurologist admitted that he didn't know much about it, but he read the materials I gave him and then he checked in with POTS experts at other medical centers.  They discussed my case by phone and agreed that I had it.

After I was diagnosed with POTS, it took me a really long time to find a doctor who really had some expertise in autonomic disorders to help me identify the underlying cause of my POTS - which turned out to be an autoimmune disease (Sjogren's Syndrome).  I ended up going to Cleveland Clinic in Ohio.  I saw a number of doctors there, but the one who figured out the cause of my POTS and autonomic neuropathy has left Cleveland Clinic and opened a up a new autonomic practice in Norfolk, Virginia.  His name is Dr. Kamal Chemali and he was great.

The American Autonomic Society has a list of it's members, and presumably a doctor interested in autonomic disorders would be familiar with POTS and related autonomic disorders.

The Dysautonomia Information Network maintains a list of doctors that have expertise in this field from around the world, however I found some of their listings to be out of date or inaccurate (i.e., the doctor has moved, retired, is no longer taking new patients, etc.).

Author and POTS activist Jodi Epstein Rhum has a list of autonomic doctors on her website.

If none of these doctors are in your area, try calling your local neurologist's or cardiologist's office or the neurology or cardiology department of your nearest "big" hospital and asking if they can recommend a doctor that is familiar with autonomic disorders.

Since there are so few doctors with POTS expertise, many people with POTS end up traveling to the Mayo Clinic in Minnesota, the Lahey Clinic in Boston, the Cleveland Clinic in Cleveland, Vanderbuilt University's Autonomic Dysfunction Center in Nashville, or Dr. Blair Grubb in Ohio.  Also, Columbia Presbyterian in NYC has a Syncope Center that should be able to run some of the more obscure autonomic tests on you - but I think any of their doctors really focus on POTS.

I've had never met Dr. Grubb, but everything I've seen about him on the internet makes me believe he is the best and most compassionate POTS expert in the U.S.  His name seems to appear as a co-author on about 90% of the journal articles I have found related to POTS.  I hear he has a long waiting list, but it may be worth it if he can really help you.  He's written a number of helpful journal articles for POTS patients, which I will eventually link to on my "POTS Literature" page.

Dr. Svetlana Blitshyen offers a service in which she consults with you and your local doctor by telephone and can provide your doctor with a written report recommending a treatment plan for you.  This may be good for patients who cannot travel for various reasons, or who simply want a second opinion.

Keeping with my 'leave no stone unturned' approach, when I was trying to identify the cause of my autonomic neuropathy, before Dr. Chemali figured it out, I also went to NYU's Dysautonomia Center.  I wold not recommend them for POTS or anything besides Familial Dysautonomia, a rare genetic disease seen in young children.  They basically said, yes, you have POTS and "there is nothing we can do to for you people."  I was pretty shocked to be spoken to you like that, but that just goes to show that even the experts can be wrong sometimes.  There are lots of things that can be done to help POTS patients, and if you can identify the underlying cause of your POTS symptoms, there is even more you can do to improve your situation.

My longtime family doctor has been my lifesaver throughout most of this.  While she's not a POTS expert, she's more willing to try new things with me and help me find treatments that make me feel better, more than any other doctor I've met.  She's been on the phone with specialists and experts trying to get them to help me.  She's been fighting with the insurance company for me, to make sure they cover my hospital stays and my home IV therapy.  She also has a wonderful bedside manner that you rarely find in today's doctors.  The nurses in the hospital thought she was my mom because she spent so much time talking with me.  When we were kids, she'd drop off medicine at our house so my mom wouldn't have to drag two sick little kids out in bad weather.  She's amazing.

Sometimes having a local doctor who is willing to work with you, and learn with you, and fight for you when necessary, is worth more than a top expert in a far away hospital who will only see you once or twice during your illness.  So ask around town to see who the best local doctor is.