Maybe if you post which doctors you have found someone here may know of them and will be able to give you advice on which one to choose.
I see a cardiologist and a neurologist, but there are some here who see an Electrophysiologist. I think, when it comes to a condition like POTS, that mostly it depends on whether the doctor has had experience with this condition or if he/she is willing to learn and educate themselves upon it, more so that the title they hold.
Well, an electrophysiologist can perform the tilt table test, which can get you a diagnosis of POTS, if you have it. The one who diagnosed me gave suggestions as to medicine and compression stockings.
They also perform ablations for SVT (supraventricular tachycardia)... something you generally want to avoid if you have sinus tachycardia with POTS as oft times it can make things worse.
But the electrophysiologist who did my tilt table test didn't follow me up- he let a general cardiologist do it (and he wound up after trying a couple of medications, suggesting I eat a lot of salt, eat pizza, which he knew was a strange thing for a cardiologist to say, and wear compression stockings if I thought they would help).
I hope those docs listed on Dinet are more helpful to you. You might call each and ask them how many POTS patients are currently under their care, if any. You might try to find out what kind of school they graduated from, when they graduated and how many years they've been treating POTS patients. You might even venture to visit their offices and ask patients in the waiting room or exiting the waiting room who have those doctors how much time they spend, how well they understand the problems of POTS and how happy they are with the treatment they receive.
I've already had the tilt table performed by a cardiologist. She put that my results where consistent wild mild POTS or deconditioning. As for what to do for it, she told me to excercise, eat salt, and drink gatoraide (the 2 of which I already did religously since I was told it might be POTS 2 years ago). I've been doing the excercising too, when able, and so far nothing has gotten better. If nothing, it's gotten worst. I've fainted 2 times since Saturday, where as before I fainted every now and again, but I was usually able to catch myself before I actually hit the floor.
The problem with going to the doctors I listed is that it is hard for me to travel long distances, and they are about 18 hours away, driving straight threw. Add all the stops along the way that I will have to make and it will be a long 2 day trip. If I get to go, I will have to bring my 3 kids with me. I don't have anyone to watch them for a week while I am gone. My husband works in the oil field and can't take off soo many days without getting fired. Sometimes I think that is a good answer. Then we would move back to Houston and the specialist would only be a 3 hour drive. LOL.
I know travelling and going to the doctor can be so draining! And I don't even have kids! I went to Vanderbilt regarding my pituitary tumor, & it was just a few hours drive (I didn't do the driving) away & we spent a couple of nights there in Nashville. It was so tiring!
I have a link to an article that says about thirty percent of people with POTS faint, but most do not- I'm sorry you are experiencing that! With you fainting it doesn't sound like a MILD form of POTS to me! They did do other heart testing too at the cardiologist didn't they? Did you also get an MRI of your brain to be sure there wasn't an issue there that might be causing your faints?
Did they check your iron and ferritin (iron stores)? Low iron can make a person feel dizzy, light headed and can cause tachycardia (in my case, I've had a normal CBC with low iron and it made tachy with my POTS worse)! My heart rate was up to 162 at its peak with the iron deficiency (I took my pulse, it wasn't a holtor monitor). Last year, without iron deficiency, a holtor monitor showed a peak of 152.... so if you haven't gotten your ferritin and blood iron checked lately, please do!
I've had stress echo, mri, x-ray, ct's, blood work. I know the last time they checked I was anemic. But I was anemic during my whole pregnancy and when they checked the baby wasn't even 2 months old yet. That was in January. But before the pregnancy it was normal. I got blood work done about a month ago before my surgery, but they didn't tell me if anything was off. Maybe I should call the doctor that did my surgery and get a copy.
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