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Dysautonomia Intl. May 17
Did you know you can download the entire Special Issue on from Autonomic Neuroscience for free? 19 journal articles from the top experts on topics like autonomic testing, medication & surgical management, sleep, EDS, MCAS, autoimmunity & more!
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Elizabeth Browne May 12
Question about What treatment works best for you? I’ve been on beta blockers for 20+ years, but I’m wondering if there’s better treatments available now. BB are great for me though; can’t function without them at all.
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PoTS UK May 12
What do you find to be the biggest daily challenge with ?
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Dr. Julie Edwards May 15
Had another -related fall today. Shit gets me feeling really defeated
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🥄SpoonieCult 🧟‍♀️ May 17
Does anyone ever get full body small nerve/muscle twitching?? If so how to fix? It's almost like seizure activity but of all the small nerves. It's body wide. Having trouble w/fine motor skills. If feels like electricity / lightening coursing through body.
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Marie Elizabeth 9h
My parents came down yesterday to visit and I was exhausted from work that morning. Today I had a tachycardia spell ~5 hours ago and since then I've been smoldering, nauseous, and can barely get myself even into a sitting position. Hate being bad company 😭
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lianne 2h
To try and enjoy or have a meaningful life is fucking expensive when you're chronic. If I didn't have my parents I'd be poverty stricken, and still not eligible for PIP. Those without a support network - you are amazing, keep going
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Bob Simonoff 40m
I know they don’t believe in giving labels to the different subtypes. I also know not everyone agrees with them. But I’d have expected there to be a consistent definition
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Fulhamatto 3h
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PoTS UK May 13
The most common reply to 'what is your biggest daily struggle with ?' was fatigue. So what's your best method to deal with it?
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Shelby May 14
Well I almost fell down the stairs🙃
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Hady Gómez III 20h
I almost fainted in the transmilenio (again) freaking I don't want to work. I wanna go home 😭😭😭😭💔
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Shannon Ehlers Danlos Awareness 🦓 17h
This heat and my ANS are like
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Scoopy May 18
Freaking Saturday Anyone Hungry??
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Kate Mitchell May 17
So I’ve (finally) started taking salt pills some days - will be all days once it’s 70 or above most days - and they’ve helped my . But what has amazed me is that I can feel myself cooling down within 15 min of taking them.
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semi-pretentious egg May 13
Hi my name is Ellie and I think all my friends are going to get fed up of me because I’m chronically ill and just getting worse at this point so I’m hella boring
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Amzie, the Ouchy Bi 4h
Off to get my 48hr heart monitor fitted. Let's see wtf this ticker is doing! maybe
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Variohm Eurosensor 22h
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Bob Simonoff May 15
Replying to @BeeHeron
This is well recognized in the trifecta community - those with (hypermobile - old name type 3) + + . I often wonder what percent of this community really has alpha tryptasemia or similar mutation
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Lucy Graham May 13
Temp. 34.7° 2 mins later 37.2° Driving me mad all day, freezing feet but sweating head area. Any ideas Thanks
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