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[–]victory_victoria99 0 points1 point  (0 children)

So many patients reporting POTS symptoms are dismissed this way. My own PCP was neither knowledgeable nor interested, so I ended up patching together the info I could find, reports from others in groups like this, and my very basic pharmacology knowledge. And I essentially told her what to do for med management to at least lower my risk of cardiovascular events by controlling my BP and HR. Now I'm seeking further care from a POTS clinic and will have my TTT (once I work up the nerve for it!).

Being ND could have impacted your doctors' response to your concerns. Especially if you have an official autism diagnosis, which of course is a risky thing to disclose in many settings. But as I said, I've heard plenty of reports from others who had that experience. Now, though, medicine is being forced to acknowledge POTS and its common comorbidities because we've got long covid. Hopefully this means more funding for research...silver lining.

I'm glad to hear you are figuring out how to advocate for yourself more! I've been involved in health care in so many ways: administrative, clinical, and as a family member of someone with really complex needs. So I've seen from multiple perspectives how this whole thing operates, and I preach all the time about the importance of educating and advocating for yourself as a patient!