specialized centers or regular POTS doctors

[momofpreciousboy]

Hi guys:

I am doing much better, but still have lots of questions, and really do not have any doctor to ask (not even family doctor--mine is HORRIBLE (got to find another)). Do you just go to the autonomic centers to be diagnosed for the most part and have to ask questions to someone else? Who does your medication changes? Are the centers mainly research only? What is the purpose of them once you have already been diagnosed- it really does not seem like there is a lot you can do for POTS other then the standard things we all list on here. I went to a cardiologist that does research in POTS, and am left with really no one to ask remaining questions, and I would like to have another child, and I will need someone to answer questions and know what they are doing .

The dr I went to is really not available- just does clinics every now and then, teaches and lectures and research. Beyond the list on the site, how in the world do you find a doctor? Does anyone know of a good doctor for answering questions, changing medications that knows the mechanisms of pots in the texas or surrounding states? Still trying to figure stuff out..Jennifer TX

[KathyP]

Hi Jennifer;

There is very valuable information right here at this site in terms of where to start your search. From what I understand, depending on where you live depends on the availability of physicians that are knowledgable and available.

As for my experience, I have only seen Internal Medicine Specialists, (or Interists) as my primary care physicians. Most insurance accept them as PCP and they are MDs. They are specialists because they are more detailed to the functioning of the body. My PCP refered me to a cardiologist to do the the tilt table test and to rule out heart abnormalities. After my formal diagnosis I just see my Internist and he helps me adjust my meds and runs other blood tests that are needed. You might want to ask your gynocologist (if you have a regular one) if they can suggest someone. If you have insurance, inquire into their physician listing. I hope this helps. Take care!

KathyP

[MomtoGiuliana]

The doctors that TEND to be most knowledgeable about POTS and its treatment are electrophysiologists (type of cardiologist) or neurologists. You may actually have someone in your area who is knowledgeable enough to help you. My recommendation, if you can't find out about a knowledgeable doctor near you via this forum, would be to seek the care of a local electrophysiologist.

Definitely if you are planning another pregnancy, you would want to have a specialist at hand, ideally. Are you on meds now? I know some people on this forum have used meds during pregnancy. According to my electrophysiologist who is a specialist in POTS specifically, he wants his patients off all meds during a pregnancy. Unfortunately not enough is known yet about many/most POTS meds and pregnancy. So, you are a bit of a guinea pig if you decide to do a pregnancy while using some of the typical medications. However, you could also get to a point in your pregnancy where you really must use a med--and that's where a specialist, like an electophysiologist, can be very indispensible--in helping you weigh risks and benefits.

Take care and good luck finding the care you need,

Katherine

[momofpreciousboy]

My original dr is the director of cardiology, and is part of a huge group of like 13 drs, including EPs, and did not even mention them. I am assuming that he would not use them. Can you not take beta blockers when you are pregnant? I have a lot of work to do. Thanks for the suggestions. You really get stuck on what kind of doctor to go to. Do you just call and ask? My cardio and POTS cardio do not know anyone. Thanks, Jennifertx

[MomtoGiuliana]

Who is your POTS doctor--is this the doctor you mentioned who is not readily available, I assume?

I originally consulted with a cardiologist (not an EP--I don't know what his specialty is/was). He was unable to diagnose me, yet it turned out in the end (months later) that one of his many partners is an EP and an expert in POTS--and did diagnose me! So, I wouldn't necessarily assume that the cardiologist you are seeing is even aware of the knowledge and abilities of others in his practice. EPs are really supposed to be up on autonomic dysfunction. Obviously, some will be more than others. If you have no other options locally, I would start by making an appt with an EP--or getting a referal to one--depending on how your insurance works.

Some people have taken beta blockers with pregnancy. Even then they were off them generally for the first trimester. My POTS doctor said he would not want me on them at all during a pregnancy. Obviously some doctors disagree--and I guess it depends on the severity of your symptoms during pregnancy.

Take care,

Katherine