I see your post has gone a while with no responses. That may be because there aren't any POTS specialists in that area to recommend; I'm not 100% certain of this, just speculating. There are really only a handful of doctors/hospital departments in the US that specialize in either autonomic nervous system disorders or syncope and related disorders (whom POTS patients often refer to as POTS specialists, though to my knowledge, no doctor actually specializes exclusively in POTS).
Patients who are not within close proximity of a dedicated specialist usually try to find a cardiologist or neurologist at a nearby teaching hospital who is familiar with POTS, even though they may not specialize in it. Keeping up with relevant publications, such a specialist may be perfectly able to coordinate proper treatment. However, if this is found to be insufficient, some patients do find themselves traveling what may be great distances to get to a dedicated ANS/syncope specialist. I hope this doesn't end up being the case for you! I would definitely start with the cardiology (or neurology) department at your local teaching hospital.
Wow! You are certainly at the right place to get help. I wish I were close to NYC instead of in Texas. Anyway, let me give you the list for autonomic specialists in NYC. (You need to stop messing around with regular docs and cardiologists and get into an autonomic specialist, trust me- I've been through it! POTS is an Autonomic Dysfunction). Back to the list - In NYC: Dr. Mark S. Pec*ker, Dr. Horacio Kaufmann, Dr. Kirk Kiprovski, Dr. Lindsey Lair, Dr. Ludmilla Bronfin, just to name a few that are experts in not only POTS but the whole autonomic nervous system! You should go to this website: www.americanautonomicsociety.com, there you will find listings of specialists by state and also some really great information. Hang in there girl, I know what it's like, and if I can help someone else not to go through the mess of ER visits, specialist after specialist, etc., then maybe I can save you some of the time, frustration, depressions, and just complete insane cycle that I had to go through. Why not start with one of the best autonomic specialists-you'll likely end up there anyway. Especially, if you develop any new symptoms-(God forbid), you will need one of the autonomic doctors to deal with it. Otherwise, you could have some yahoo trying to tell you it's just anxiety! I had that happen until I started saying Uhm- hey, if I were anxious, yeah my heart rate might be affected, but my blood pressure wouldn't be 80/40 -Duh! As it turns out, my condition has gotten more serious than anyone thought in the time it has taken to get the proper help, so please just start off with the right doctors, and save yourself some time,money and mental health along the way. I wish you the best! - Lorie.
Sorry, but he first doctor that I listed has a last name that starts with Peck-- and has another 2 letters on the end, apparently this website thought I was trying to spell a bad word and starred it out. I'm not, that is really the guy's name, and he is a very prominent physician. Okay, I guess the guy's name is pretty funny, but I promise that I'm not playing around about serious health issues. You should just go to that website that I told you about and you can see for yourself all the physician listings. This is very real and nationally recognized organization. What a bunch of kindergarteners to cross out the name! Oh well, what can you do? -Lorie.
Thanks for the links, gals! I haven't seen the americanautonomicsociety one so I can't speak to that, but I would like to add a caveat to the dinet one. One way to research a doc is to search his/her name on PubMed--a truly "world renowned" specialist will have publications on the subject in peer-reviewed medical journals. Some of the comments on dinet boast that Dr. So-and-so is "a world wide expert" etc. but there may not be any evidence to support it; when I see false claims like that, I smell quackery, and unfortunately a patient who has most likely been duped. I believe many of those names come from patient recommendations, so you have to take them with a grain of salt. It's still a great starting point, just make sure you check things out for yourself too.
Chrystia - if you are still looking for someone let me know. I was dx'd at Mayo with POTS but have been "trying out" some docs here to to manage the POTS treatment and would be happy to share what i've learned / experience. I've not been wild about the experience but the doc at least is familiar with POTS and has some patients like me :).
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