Primary Care Doctors And Management Of Pots

[ks42]

I know a lot of us probably don't live near POTS specialists / major medical centers, since there aren't a lot of them, so I'm guessing some of you have to manage your POTS through local doctors who may not necessarily be autonomic specialists.

But, how do you find a PCP who is comfortable prescribing meds and learning about POTS (or who is POTS savvy)?

I've reached a point where I can no longer see our local POTS doc, so my spouse (who also has POTS) and I have been consulting with a POTS neuro from out of state (recommended and approved by my PCP). My PCP then becomes responsible for prescribing meds, ordering tests, etc. She originally said that was fine, but once she actually got the protocol recommendations sent to her from the POTS doc, she said the tests for autoimmune disease & pulmonary infections were useless so she wasn't going to order them ("there's nothing we can do if they come back positive so why run these tests") and the meds were too dangerous for her to be comfortable with (migraine meds, Atenolol & Florinef for my spouse, etc). She's been wonderful and open minded up to this point, so this is definitely confusing and disappointing.

I don't have another specialist familiar with POTS (and I don't think there's one around here) so my only option is to try and find a PCP willing to treat my POTS, or work off of an out of state specialist's protocol.

How do you all deal with things like this? Are your PCPs or other non-POTS specialists generally willing to manage your POTS? If so, any tips on how to find a good one that will work with an out of state doc? Or, do most of you have to travel long distances for medication management & follow-ups with POTS specialists?

[Katybug]

Have you considered finding a cardiologist to manage the "cardio" type meds and a neurologist for the "neuro/migraine" type meds? My cardiologist is not a POTS specialist but she knew enough to give my diagnosis and is smart enough and compassionate enough to manage my cardiovascular type meds. My neurologist is a dysautonomia and migraine specialist and handles the other types of meds.

Why does the PCP think that the autoimmune/pulmonary testing is useless? Most known autoimmune diseases DO have treatments these days...not cures, but targeted treatments. Regardless, you could go to a rheumatologist for this testing.

[ks42]

Katybug - I was blown away by that "autoimmune testing is useless" response too! She seemed surprised when I said there are options such as IVIG, immunosuppressants, etc that treat the underlying autoimmune disease (and sometimes help POTS in the process)!! Also, our POTS doc we consulted is worried about a fungal lung infection, so to me, it seems important to have that diagnosed and treated. So I don't know. I'm hoping maybe she didn't quite mean it the way it sounded, though.

I might try your approach and see if we have better luck going through different specialists. Although, we've tried finding a cardiologist to prescribe the cardio meds, but so far, because we live in a town with a POTS neuro, the cardiologists that we've seen have told us they have a policy that they don't treat POTS, they refer all cases to the POTS neuro here (who we can't see anymore). Now I think I will keep calling around though, because there are a ton of cardiologists / EPs here, so hopefully I can find one that will at least do the cardio stuff.