How do you feel?

[jillny]

I am wondering, once you get diagnosed, does anything change? Is there medication that makes it managable? Diet changes? I know this must have been answered , but I am just so confused . Has anyone in NYC seen a doctor that specializes in this? There are just so many symptoms, how does everyone deal?

[ethansmom]

I personally think that once you've been diagnosed and have found the treatment that works best for you, you will probably see some type of improvement in your symptoms. Most people do not experience full recovery, while some lucky ones do, and others may get progressively worse.

There are various medications that may make POTS manageable, but it can be different from person to person. Commonly used are beta blockers, Florinef, Midodrine, anti-anxiety meds, and others. Alternatively, there are many things that can be done without the use of medications, such as added salt intake, drinking plenty of fluids, mild exercise to tone the muscles, getting plenty of rest, and avoiding situations that exacerbate your symptoms (easier said than done!).

As far as dietary changes, I firmly beleive that POTS patients suffer invariably from the foods that we eat. A lot of people on this board have mentioned sensitivity to sugar, starches (like pasta), gluten, and various other foods. For me, I have been tested for food allergies, and I cannot tolerate those things as well as dairy, wheat, eggs, or corn. Testing for allergies might be a good idea, as well as ruling out foods that you think might be making you feel worse- symptoms of food sensitivity can range form intestinal upset to other POTS symptoms such as fatigue or tachycardia.

I don't live in the NY area, but here is a link that might help you locate a doctor:

http://www.ndrf.org/physicia.htm#sectN

Best of luck to you, I hope you get some answers soon, and some great advice!!

[DickinsonsMeadow]

@jillny, I'm waiting for a diagnosis and pinning a lot of hope on the doctor's understanding POTS better than I do. It's always best to be your own advocate, but there's some comfort in being treated by someone who knows what they're doing. You're right, there are so many weird symptoms! Hoping to get to the cause.

[Pistol]

@DickinsonsMeadow I struggled for 2 years to be seen by the medical community, despite very severe symptoms ( including passing out and autonomic seizures, 2 positive TTTs,  and having to stop working ) I was dismissed by many cardiologists and even one neurologist from a renowned autonomic clinic. I got a referral to an autonomic specialist out of state and was diagnosed with HPOTS based on previous tests, symptoms and further testing. Once diagnosed - and understood by this kind and knowledgeable physician - it felt like a mountain was lifted off my shoulders. Dismissal, ignorance and misinformation on any physicians end leads to further stress, trauma and confusion. Since then ( 12 years ago ) a lot has happened in the recognition of dysautonomia, and we even now have an ICD code defining our condition. Be hopeful, do your research and be careful in selecting your providers!