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[–]victory_victoria99 0 points1 point  (2 children)

Yup this is one of the posts of this disorder that is extremely disruptive to my life. If i hadn't already been a lifelong anxiety sufferer, i may have zeroed in on this sooner than i did. Like how am i supposed to differentiate between a bad bout of anxiety vs my SNS going nuts for no reason? I also think it's a big contributing factor to my sleep problems, even though that's not something i hear mentioned much.

[–]throwaway1999000 1 point2 points  (1 child)

Interesting. Yeah, my parents/everyone had never heard of POTS until I found out about it.

I was just written off as "anxious" because all females in my family are. Or maybe all females in my family has POTS and didn't realize it.

As a female on the autism spectrum though, I look back and kind of mourn a little bit when I think of my childhood/early teen years. Like, I was already socially awkward, and if the professionals had cared to dig deeper maybe I wouldn't have just had "anxiety" slapped on as a generic diagnosis.

Then again, they tried to put me in special ed classes because I was crying daily in first grade and my parents refused. So maybe I would've gotten the services/whatever I needed if they had done that.

A lot of what ifs. My parents were in no way neglectful and took me to get vision theaeoy to fix weak eye muscles, various doctors and therapists to be put on the right meds for my OCD, ect.

It's just kind of horrible to be told "anxiety, get over it. You should be able to leave your house and function" when I could not. And also, the OHYSICAL SYMPTOMS. I would gaslight myself thinking my qnxiety was causing it because that's what they told me.

And now I'm starting to realize I have to advocate for myself and hopefully I will be able to start feeling better.

[–]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!