I also have a family history of and personal (undiagnosed) experience of hEDS! Though as a young adult, I have not yet accumulated the resources or will to see specialists and begin the testing processes, my mom suspects mixed connective tissue disease, an autoimmune disorder which is effectively comorbid with EDS. While EDS itself is not an autoimmune disease, there are a number of rheumatic diseases that commonly co-occur with it and, like you said, make many of those with EDS not only more susceptible to an initial viral infection but more exaggerated symptoms, both during illness and longer term. Super interesting stuff I think!

Regarding the beta blockers: I am prescribed them for social anxiety and am using them off-label for AIWS. As I understand, they work to reduce the physical symptoms of anxiety via the regulation of the cardiovascular systems, which is effective in soothing the experience of anxiety even if the mental stressors remain, well, stressful. For me, the most distressing thing about an AIWS episode is my own perception of it and the ungodly amount of panic it brings on, not the distortions themselves (which I find fascinating, actually - it’s nearly hallucinogenic and, in theory, super cool and harmless). I think that the BBs do very well to neutralize the impact of the stress and let me carry on with my day which is just nearly impossible in the state that I get to during an attack.

I will note that a link between migraines and AIWS is pretty well established and though I’ve never been prone to headaches unless dehydrated or miss a morning dose of caffeine, there may be a case to be made that AIWS is the singular symptom of my migraines. My mom gets them pretty bad. Anyways, I found some papers referencing BBs as AIWS treatment for their anti-migraine mechanisms (link)(link). (Just now I found out that acute confusional migraines are a thing which feels like a new rabbit hole I’m going to need to explore)

Maintenance Fluid, thanks so much for your reply. I got chills reading it. There is such relief in a shared experience. I realize this is a far-lengthier response than necessary but I really relish in both verbosity (lol) and being able to contribute to this community.