u/Happy_Yam_4572

Hiya EDS buddies, I've been having some weird throat stuff and I'm wondering if its EDS or CCI related. It feels like I have something stuck in my throat and traveling up, my throat is getting burnt reflux sensations, and I keep on gagging involuntarily. The top of my throat also just feels heavy and weird, but I can still breathe fine. Does this sound familiar to anyone else's experiences? What was it for you and how did you manage it? I also have daily seizures and gagging whilst seizing is kinda freaking me out lol. Making sure to lie on my side and I'm not actually vomiting but I really don't want to choke... Any tips for diagonsis or treatment?

I have had non-epiletic seizures since Jan 2026. I have been told by some doctors that its FND (no other FND symptoms though) and by some that it is caused by brainstem compression due to CCI caused by my elhers danlos syndrome. My seizures are reliably triggered by my neck positioning and improve significantly with a neck collar.

I have been getting more frequent seizures over the last week and its getting harder to be left alone (had a fall) or reliably eat safely. They last for less than a minute but can roll with an aprox thirty second break between them for an hour. Yesterday they rolled for an hour, then for thirty minutes. I had 5 whilst sleeping last night. Today i had 62 seizures between 9am and 9pm as observed by mum. Is this concerning? When does it warrant assessment or become an emergency? What should I do?

I have had non-epiletic seizures since Jan 2026. I have been told by some doctors that its FND (no other FND symptoms though) and by some that it is caused by brainstem compression due to CCI caused by my elhers danlos syndrome. My seizures are reliably triggered by my neck positioning and improve significantly with a neck collar.

I have been getting more frequent seizures over the last week and its getting harder to be left alone (had a fall) or reliably eat safely. They last for less than a minute but can roll with an aprox thirty second break between them for an hour. Yesterday they rolled for an hour, then for thirty minutes. I had 5 whilst sleeping last night. Today i had 62 seizures between 9am and 9pm as observed by mum. Is this concerning? When does it warrant assessment or become an emergency? What should I do?

I've been given a probable diagnosis of CCI based on symptoms by a rheumatologist who specialises in EDS. My country does not have upright mri so I cannot be diagnosed via imaging. I have been receiving prolotherapy from him for four months. I have seen some improvement but still have daily brain fog, altered sensation on my right side, pseudo seizures and some audio/visual symptoms. How long does it typically take for prolotherapy to work? What other treatment options are there? Would you recommend surgery at this stage or are there other conservative treatment options to try? What can I do to get a better quality of life? I would appreciate any advice, or personal experience people can share.

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I've been given a probable diagnosis of CCI based on symptoms by a rheumatologist who specialises in EDS. My country does not have upright mri so I cannot be diagnosed via imaging. I have been receiving prolotherapy from him for four months. I have seen some improvement but still have daily brain fog, altered sensation on my right side, pseudo seizures and some audio/visual symptoms. How long does it typically take for prolotherapy to work? What other treatment options are there? Would you recommend surgery at this stage or are there other conservative treatment options to try? What can I do to get a better quality of life? I would appreciate any advice, or personal experience people can share.

Any advice for my urgent nuero appointment tomorrow? I've been reffered by an optometrist after sudden changes in vision to one eye (blurriness, grey haze, less color and brightness, loss of peripheral vision) and no changes to my eye structures, (my retina is fine wahoo). I want to make sure this is looked into and not dismissed

Woke up with blurred vision in right eye. I can still see colour but everything is out of focus, and my peripheral vision seems smaller. Very mild 2/10 eye pain, and a pressure like sensation. Is this an EDS thing I should be concerned about or should I just sit with it? Not too fussed, body is always doing weird things but wanted to make sure it wasn't a sign of a more significant complication. Vision has improved over past two hours but eye still feels weird.