• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Weird symptom. Eyes feel like they're moving especially when closed. Think it's in my mind.

Sophiedw

Senior Member
Messages
383
Does anybody else get this? It feels like there's a swirling movement of my eyes like a rocking sensation and sometimes it jerks me awake like I'm falling out of my own body.

It's very hard to explain. Think it correlates with brain fog like my brain is scattered. It also correlates with hypnic jerks. Every time I slightly relax it's there, like my eyes are swirling around but they're not actually moving so I guess it's some disordered brain waves.

Weird.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
I believe that ME messes with neurons, and where and how varies with the individual. I have double-vision, which I assume is due to ME affecting the eye muscles or processing. Getting the feeling of movement without actual movement seems plausible to me.

I suppose there's at least a small chance that doing eye exercises (look left, right, up down, follow an object without turning your head) might reduce it. I haven't found anything yet to reduce my double-vision. :xeyes:
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
It might not all be "in your head" @Sophiedw Can you get someone to check you for nystagmus (involuntary eye movements) That could be done either face to face or in a video call. Just a friend or family member, as it's impossible to do yourself.
 

Sophiedw

Senior Member
Messages
383
That could be done either face to face or in a video call. Just a friend or family member, as it's impossible to do yourself.

Hey, thanks for the reply. I suppose I'm more venting / trying to see if it's a common feature of anyone's illness. I think it doesn't really feel like my eyes are actually moving but I will have someone check next time it is bad. It feels as if they should be moving. Like there's some weird point of attention roaming around my visual field that turns more and more into a rocking and visible swirliness when I shut my eyes. Not the easiest thing to explain! I feel like if someone had it they would slightly get what I meant though. Take care :)

Maybe mild seizures?

Yeh possibly! When it was really bad it correlated with having hypnic seizures that were much worse than normal hypnic jerks. Like I'd be having full on jerky seizures sometimes and glitching out in mind and body. That was horrible and made me very afraid of going to sleep 🤢 luckily that's passed and it's less bad now but still present :/ I think a combination of bcaas and boron settled the really extreme version of it but I continue to havd a more mild version. Very confusing. All part of the fun I guess 😴😩😋🤷
 

Sophiedw

Senior Member
Messages
383
I suppose there's at least a small chance that doing eye exercises (look left, right, up down, follow an object without turning your head) might reduce i

Thanks for the response wishful. I will try this as well!
 

Sophiedw

Senior Member
Messages
383
So sorry about that. That aspect passed after a time for me. Is a horrible thing to go through on top of everything else. Hugs. ♥️
 

xebex

Senior Member
Messages
840
Wow this reminded me of a horrible symptom I used to have when I was In a crash, my eyes would feel like they were rolling back into my head over and over again! It was awful! It has gone away over time and I do believe is related to glutamate/gaba balance causing some kind of neuron excitory response. I did cut glutamate down considerably in my diet which I think has helped.