u/Justgettingby_4now

I’ve had some symptoms my entire life (likely from hEDS) and have finally been evaluated for this. I have the four types listed on the photo of the paper here from my specialist. she’s absolutely incredible. She prescribed new glasses with a very slight vertical prism what I will wear for a few weeks. then I will get re-tested to see if it’s helped at all, then we will start weekly visual therapy for 6-8 week during which she will tailor and adjust as needed along the way.

I would love stories of success with glasses and/or the visual therapy please! what was it like? how did you start to notice improvement? what were your worst symptoms? how long did it take to feel differences?

My primary symptoms have been constant dpdr, nystagmus, major anxiety, eyes feeling super dry and somewhat painful, doubpe vision, difficult concentrating, etc. I remember as a child and young adult sometimes while overstimulated visually I’d get the dpdr but it would go quickly once getting into a better environment. or while driving I would cross my eyes and squeeze them for a moment and the dpdr would go away. I never understood how or why it helped, but when sharing this with the doc, she was like YES, that sounds like it was your way of resetting when the convergence issues flared. SO many things make sense now in hindsight.

thank you so much!

Update: I appreciate that medication has worked and continues to work for many of you, however I cannot tolerate literally any medication aside from what I’m currently taking to manage the POTS symptoms. And yes, I have tried a LOT of different meds that have been suggested. Please don’t recommend medications because at this point I just cannot try them anymore. They all made me worse and I’m no longer willing to risk getting worse by trying things that haven’t worked. I’ve tried almost every antihistamine available, a bunch of sleep meds, natural supplements, etc. My body says absolutely not every time. And most I tried multiple times before stopping. It’s incredibly frustrating and disheartening because I wish so badly something would work for me in that realm. But it just doesn’t. And I’ve worked hard to try and come to a place of acceptance and forgiveness with my body in that.

I just needed to vent and ask for some encouragement to keep going please. PLEASE only positive shares on this post. I truly cannot handle any horror stories or others venting about how bad off they still are years out. I know people are suffering and need to share their stories too, but I’m in a super fragile state and really just need some positive/success stories of improvement right now.

It’s been almost 17 months since la st time I had covid. The dysautonomia still has not improved, especially at night. Between sleep cycles I have an autonomic flare with racing, pounding heart, full-body buzzing and vibrating, shortness of breath, sweating, and panic. This also happens after I eat. Brain fog and dpdr are still god awful with no break. POTS is still so bad too.

I have tried different diets, smaller more frequent meals, brain retraining, therapy, different meds, tons of water and electrolytes, etc etc etc. literally nothing helps. I’m so scared my system will just never calm down again. I need my sleep to improve. I need to be able to eat without feeling like I’m dying after.

Has anyone else had these symptoms for a long time and finally gotten better without doing anything in particular? I feel so hopeless and depressed and am losing steam to keep fighting.

so much love to all of you and thank you in advance for any support 💜