#dysautonomia struggle rant
I've been dealing with #POTS for quite a while now. Now, for whatever reason, in addition to hr spikes when standing, my heart decides to be very calm out of nowhere. Like, to the point I can't take a beta blocker for the tachycardia, because when it calms down, I'll be dizzy. But ALSO when I'm 'normal,' I'm getting spontaneous body-driven waves of panic, which a beta blocker would help. But I can't. So?
đ đ
WHAT GIVES
I'M LOSING IT đ
1. Day out with the family, lots of smiles and cute pictures of the kids.
2. Saved myself from passing out today! Close one đŤ
(The trick was a caffeinated soda, salt, and sitting today) #POTS #Dysautonomia
3. Got some fun fidget-ey items at a shop. Apparently that's a thing for me. 3D printed critters and some rubix-style cube thing brought me a surprising amount of joy. #AuDHD
From a Nancy Klimas team:
Elevated blood viscosity is associated with dysautonomia in long COVID symptoms
https://www.sciencedirect.com/science/article/pii/S2666602226000649
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
#dysautonomia #PASC
"Despite having similar pre-pandemic health profiles, participants with eye symptoms reported significantly worse overall health than those without such symptoms. Participants with symptoms also had higher rates of postural orthostatic tachycardia syndrome (rapid heart rate upon standing) and autonomic nervous system disorders such as dizziness, tremors, and difficulty regulating body temperature (38% vs 15%); gastrointestinal issues (21% vs 11%); and migraines (15% vs 4%)."
Sounds like Sjogrens and/or small fiber neuropathy.
Feeling exhausted this morning, despite a good sleep.
Begining to realise how exhausting it is to live with #dysautonomia (which developed following #shingles vaccine) and that I need to allow myself to just sit and let my muscles fully relax. Of course, the 3 levels of #tinnitus (one of which is pulsatile) is adding to the exhaustion.
Not looking for sympathy, just needing to say it out loud (well, type it out loud...đ)
A couple more short quotes from the paper:
"Long COVID (LC) is a mass disabling event of significant public health concern ..."
"The clinical characteristics of Long COVID overlap with those of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and dysautonomia ... risk of both these conditions increases by up to 60% and 80%, respectively, after COVID infection."
#LongCovid #PostCovid #PASC #CovdIsNotOver #MEcfs #Dysautonomia #PublicHealth #Disability
Hey medical side of fedi, can I get some advice?
Has anyone heard of two people coming down with the same exact sudden onset #POTS and/or #dysautonomia symptoms at the same exact time?
Ich habe LongCOVID. Nicht ME/CFS â das muss ich vorweg klarstellen, weil der Unterschied wichtig ist. Mein Fall ist moderat: PEM, Dysautonomie, eingeschränkte Belastbarkeit. Ich bin grĂśĂtenteils fuâŚ
If you have #SevereME, like me, you are valuable however and whenever you can show up
Iâve hosted monthly support group meetings for Iowa #dysautonomia and #EDS patients for years, it takes a lot, canât always do it, but everyone is grateful for these spaces no one else provides
Fylgja
Tom Kindlon
Rhyothemis
kaffando
Ahimsa
â¨ď¸dingus-mo-bingusâ¨ď¸đââŹ
Dirk Paessler
Heidi
Emily Johnson