[conspire] Dysautonomia again was Re: (forw) The fastest vaccine development ever

[Deirdre Saoirse Moen]

What got me about the docs mailing list was one item Rick had forwarded (with my permission): the one I'd written about dysautonomia in long covid. Now, had I intended that from the outset for that to be forwarded, I'd have structured it somewhat differently, but I knew Ruben had left conspire.

Part of the excerpt of that:

> One such story:
> 
> https://theconversation.com/im-a-covid-19-long-hauler-and-an-epidemiologist-heres-how-it-feels-when-symptoms-last-for-months-143676
> 
> * racing heart
> * heat intolerance
> * gastrointestinal issues
> * ringing in the ears
> * chest pains
> 
> Sounds pretty random, right?
> 
> But it’s not.

At that point, one of the docs regulars, the only one I know well enough to have taken an instant dislike to (and one of the perhaps half a dozen people in thirty years I’ve asked not to email me), responds to the effect that they’re imagining their symptoms.

Well, no, dysautonomia IS NOT IMAGINARY. The sympathetic and parasympathetic nervous symptom are very real and imbalances and dysfunctions, especially post-viral ones, are very real and documented over and over and over. Not that I’d been reading dozens of papers on dysautonomia or anything. :P

Now, what is imaginary is edge case diagnoses and treatment courses (e.g., massive long-term antibiotics for “chronic lyme disease”). The symptoms are real; whack job treatments don’t help. (Research is still research and is always, by its nature, along the edges.)

This is the heartbreak of chronic illness: people with a seemingly random bucket of symptoms get shuffled around, told they’re not really sick and are imagining things, and they’re fine, sent home, and sent a bill.

Case in point: in 2011, I was working late at Apple, and noticed I had massively blurry vision in one eye and went immediately to the ER. They couldn’t find anything wrong. Had the usual head and eye and heart exam. Crickets.

Well, I’d been sitting up a long time that day, and by the time I got into my car it was about 1 am. One of the common symptoms of POTS is? https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome *blurred vision*

That wasn’t actually the first time I went to the ER for POTS symptoms, but that one just really irritated me when I remembered it last week.

-- 
 Deirdre Saoirse Moen
 deirdre at deirdre.net