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Dysautonomia (POTS) doctor?
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Dysautonomia (POTS) doctor?

What kind of doctor should I go see about POTS?
I was in the ER yesterday with some issues and the ER doc said he was pretty sure I had POTS and suggested going to a specialist.  But I haven't had any luck googling one in my area.
I live in Northern Virgina.
Should I look for a cardiologist or a Autonomic Nervous System doctor?

Thanks
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8 Comments Post a Comment
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492869_tn?1285022533
POTS, and other forms of Dysautonomia are typically diagnosed by either a Cardiologist or Neurologist.  If you're having trouble finding a doctor, I'd recommend looking into specialists at local teaching hospitals.  What kind of symptoms are you experiencing?
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612876_tn?1355518095
I second halbashes recommendation that you look for a specialist at a teaching hospital.  You may not be able to find out if they are knowledgeable about POTS/dysautonomia without calling the office and asking if they diagnose/treat patients with these disorders, so don't be afraid to call around until you find someone who sounds like a good fit.

If POTS is the top suspect, you will almost certainly need a tilt table test.  What kind of symptoms do you have?  Did they do any tests or rule anything out in the ER?
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Avatar_n_tn
They ran a few tests in the ER - hypotension and hypothyroidism... both results came back normal which is why he was leaning towards POTS.
My symptoms are blacking out (not fainting) when I stand up after laying down for a while.  I also have a long history of fainting - I remember the first time I fainted, I was in elementary school.
My blood pressure stayed around the 90 over 60 range while I was in the ER, but dropped down to 50 over 30 when I fainted twice.
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492869_tn?1285022533
Your symptoms do sound very much like some type of Dysautonomia, but I'd recommend having a full workup by a Cardiologist.  Especially with your long history of fainting, you will want to be certain that you don't have a heart arrhythmia.  A Cardiologist can also order a Tilt Table Test.

In the meantime, drinking extra water and sports drinks may help to stabilize your blood pressure.  I hope you are able to find a good specialist soon.
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Avatar_m_tn
i have ben to 15 doctors that all said i was perfectly healthy when im to weak to get out of bed.  all 15 couldnt find anything at all.  i seen many cardiologist and nurologist.  the one that finialy diagnosed me was an electrophisiologist.   i live in virginia in the hapton roads area.   theare are just no good doctors in this area.  if you live in northern virginia.  you could just go a little farther north to johns hopkins in baltimore.     for me i have to go to a teching hospital cuz even though they have a diagnosis they have no clue what to do about it.  so aparently in this part of virginia thats ware they keep telling me to go. so good luck!    
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Avatar_n_tn
Hi jasminerk13 -

I just came across your post, sorry it's so late.  My daughter and I just found Dr. Hasan Abdullah at The Children's Heart Institute (http://www.childrensheartinstitute.org/educate/dyna-pots.htm) in Reston.  He sees adults who have POTS and is a very experienced POTS doctor.  Check out http://www.dinet.org.   It is great resource for POTS and dysautonomia and has links to lots of other resources.

Hope you've had luck in getting treatment -
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Avatar_f_tn
For POTS, you need to see a Neurologist if there is one in your area that knows what they are doing. POTS is a autonomic disorder. A cardiologist can diagnose POTS but THEY CAN NOT EFFECTIVELY  treat pots. Where I live, the neurologist have no idea what POTS is so I had to see a cardiologist. And he finally told me yesterday actually after 3 yrs that there is nothing he can do for me. A good website for you to go is www.dinet.org. That website has alot of good info and a list of dr's that specifically treat POTS. As I have read in other posts, if you must see a cardiologist then your best choice is an electrophisiologist. But I stress, a cardiologist should only be used to diagnose and not to treat. POTS is NOT a cardio problem. It is a neurological problem. Use the dr list on the website I mentioned and you will have the best info you can get. I actually have to move out of state in order to get to a dr that can treat me.
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612876_tn?1355518095
I'm not sure where you got the idea that POTS cannot be treated by a cardiologist, but actually two of the leading experts in the field of POTS research and treatment in the US are cardiologists:  Drs. Blair Grubb and Julian Stewart.  If you were to go to one of the fully equipped hospital autonomic clinics (Mayo, Vandy, or one of the ones in Cleveland or NYC), you would find that they are jointly staffed by both autonomic neurologists and cardiologists.  

I'm sorry that you are having difficulty finding a knowledgeable doctor to handle your case.  This is an ongoing problem, particularly for patients in the southern and western US where none of the aforementioned hospital clinics are located unfortunately.  I hope that you will consider starting your own thread if you would like to discuss this further so that your post will be seen.  I'm not sure if you're aware but you actually responded to a person who posted all the way back in April of 2009, a year and a half ago.  As such, this thread is outdated and responses to it are likely to be overlooked.  To start your own new thread, click on the green "Post a Question" button at the top of this page.  

Best,
heiferly.
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