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"Our study finds that 67% of individuals with Long COVID are developing dysautonomia. That’s an estimated 38 million Americans with Long COVID dysautonomia, and millions more around the world,” says Lauren Stiles, President of Dysautonomia International and Research Assistant Professor of Neurology at Stony Brook University.

"We need the National Institutes of Health to immediately address this crisis and begin funding research aimed at developing effective treatments for Long COVID dysautonomia,” says Jacqueline Rutter, a Dysautonomia International Board Member whose family has been impacted by Long COVID.

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[-] insomniac_lemon@kbin.social 6 points 1 year ago* (last edited 1 year ago)

As someone who (likely) already has dysautonomia (hypohidrosis, POTS, EDS, sleep/energy issues) could long covid cause additional autonomic issues? Well, I assume covid itself would be severe just due to breathing difficulty alone.

[-] Drusas@kbin.social 2 points 1 year ago

Covid doesn't always cause breathing difficulties, especially some of the more recent variants.

I would guess that once you have dysautonomia, you have dysautonomia and that is that. I have dysautonomia and it hasn't been worsened by catching Covid or anything else--it always just sort of stays about the same.

[-] insomniac_lemon@kbin.social 2 points 1 year ago* (last edited 1 year ago)

I should clarify I wasn't wondering if it'd cause existing issues to get worse, but different additional issues that are related to dysautonomia. (and edited the original to reflect that)

[-] slicedcheesegremlin@kbin.social 2 points 1 year ago

what exactly are the symptoms?

[-] insomniac_lemon@kbin.social 4 points 1 year ago* (last edited 1 year ago)
  • hypohidrosis: lack of (significant) sweating (I overheat easily)
  • POTS: I get out of breath if my heart rate rises too high, which easily happens when going from laying to standing (or anything aerobic, or physical things that shouldn't be aerobic). Also blood pooling in feet if salt is too low
  • EDS: probably more of a cause/related thing (and not too severe/frequent for me), but if I move the wrong way I have partial dislocations. This is a collagen issue so I imagine it's probably generally not good physiologically (I'm in the dark with it) because it's a vital material in your body
  • sleep: I don't really sleep well (also have poor quality dreams if much at all, though that might be related to aphantasia, but at least I don't have nightmares like I did when I had more vivid dreams as a child)
  • energy: sluggish, hazy feeling. I suspect this might actually be related to the inner ear (Benign positional vertigo) even if it is mild enough that dizziness is not apparent. Also overlap with diet/activity (though it's consistent despite changes) and depression etc

Also, neck pain commonly and I've had TMJ symptoms (jaw muscle/ear pain) twice.

[-] slicedcheesegremlin@kbin.social 4 points 1 year ago* (last edited 1 year ago)

Thanks! That sounds terrible, especially now that it's becoming widespread.

[-] Nausiyan 2 points 1 year ago

I had POTS before long covid but I was able to walk then. Now just sitting up causes me to black out plus I have so much more going on that I have no idea what it is yet. Doctor aren't rushing to find out either.

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this post was submitted on 26 Jun 2023
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