Nystagmus as a Sleep Disorder?

Hi, I’m new here, and I have Nystagmus which I consider a sleep disorder.
Does anyone else have a problem with sleep or being troubled by this eye condition?
I consider it to be a disorder. And doctors I’ve met don’t know how to cure it.
Has anyone ever gotten rid of theirs, or has it gone away by itself?
I have a remedy for mine, do you?

According to the ICD - 9 -CM codes {The International Classification of Diseases}, nystagmus is not an identified sleep disorder.

It is an ocular condition defined as: Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements. These movements often result in reduced vision and depth perception and can affect balance and coordination. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern.

Well from my observations every time before I sleep or get up, it seems like it’s a form of R.E.M. sleep only while being awake.
I have more I’ve found out: It’s not just the eyes, it’s also based on critical brain functions.
Here’s my main observation: It’s like many other disorders and it can affect your brain in many ways.
I came here to give my findings, if it’s okay.
I’m trying to be as professional as I can. Thanks for replying so quick. I’m surprised! :slight_smile:

Please give me a chance!
That definition of nystagmus you gave might not be correct. I studied my sleep by myself for awhile.
Nystagmus changes in certain environments, and it connects to the cerebellum.
That cerebellum links to memory, sleep, and dreams.
I’m like a doctor to myself. You have to think about it differently. (What causes the movements).
Yes, I studied a bit on the parts of the brain it affects and had to study what I felt what my nystagmus was doing. (Not a Doctor)
Nystagmus can cause tiredness and eye strain, and it affects sleep directly.
When I lay down, it gets uncontrollable, the cerebellum turns on then I sleep.
Isn’t this place patient-led?

Anyway, in summary, I think it’s the brain, not the eyes. It’s what the brain instructs the eyes to do.
When you wake up at wrong times, it gets worse, and if you fall asleep right, it slows.
Nystagmus seems to be like a mix of Epilepsy and Narcolepsy.
It seems like the brain gets confused, and doesn’t know what signals to send. Making everything unstable.
It’s also how the eyes send signals to the cerebellum.
I actually once stopped my nystagmus, but only temporarily. Once with my own glasses I made.
Second time, was when I started having lucid dreams. After I woke up it stopped for a 10 minute period.
Main thing: It’s like a way to cheat sleep. It has ups and downs of course.
I had to study myself because I got “tired” of being told there was nothing I could do about it.

A remedy I made was covering the eyes with a dark cloth and closing the eyes until everything is dark.
It helps stuns the eyes, and can prevent my condition from getting painful. Helped me sleep.
Sorry if that was a handful. If you are confused with anything I will explain it better.

Thank you for sharing your experiences!

The sad thing is, is that I don’t know if this will help. So some deeper detail…
I have Congenital Nystagmus (Born with it)

A CURE for this condition might be related to the cerebellum and limbic system as a whole
Stimulating memory while in a spacious room that is full of sunlight can stop it, leading to your whole brain and body with more blood-flow. This makes you feel warm surprisingly.

Artificial Light might cause Nystagmus as a whole, damaging your ability to have natural rhythm
Being Outside helps your mind have more air, leading to similar blood-flow without warmth.

A couple things that are connected to this eye shaking problem are
Sound, Sleep and Balance, Memory and Vision.
I have had the capability to deal with it.
It seems like sound triggers the cerebellum to turn on and off. If it doesn’t, you want to fall asleep again.
(EHS or Exploding Head Syndrome)
It affects sleep with tiredness, possible nausea, and balance problems.
(possible Narcolepsy)(Vertigo)
It possibly affects memory when the eyes move. Related to the Hippocampus and Cerebellum memory functions. (Like Short-Term Memory Loss) (Dyslexia?)
It affects vision by making you light-phobic (sensitive to light). That means you have to listen to that and avoid artificial light and only have natural light. Going outside more is a great remedy to help nystagmus stop. (Has to do with how the eye senses motion)

(EHS) is a syndrome that doesn’t cause permanent harm just loud sounds during sleep that wake up with a jump-scare.
Vertigo is caused by the continuously moving eyes and it can make you sick.
It might lead to headaches.
It affects memory at times. When the eyes move you might get short term memory however that I still need to study.
Vision gets affected near something that triggers the Nystagmus.

Side notes
I had a lazy eye that made me ignore when those eye movements I was little, and once was cross-eyed. That was probably a way my brain tried to cure itself.
Regular glasses never worked so I made a pair.
I have lucid dreams which stun my moving eyes when I wake, and my eyes go extremely fast and my cerebellum slowly seems to ‘move’ right before falling asleep. (Fastest way to go to sleep, a blessing and a curse.)
My Theories
It seems like I had a focal seizure with vertigo and the nystagmus, that time I recorded that my cerebellum couldn’t transition from sleeping to waking. Perhaps EHS helps you sleep and wake.
Maybe it’s a small part of sleep paralysis gone wrong.
That’s why you must listen to what your brain feels like.
If you have head pain it might become something else.
It’s like the body doesn’t think it’s awake, and honestly I think it naturally tries to sleep correct, but because of artificial light, the brain doesn’t know what’s happening.

Something weird that’s hard to explain is when I’m awake, it’s like narcolepsy with hallucinations (flashes and sparkles, sometimes right before sleep and dreams) and frequencies.
But maybe the stuff I see is from rods in the eye. It even does it when I blink. Might aid sleep.
The frequencies seem to come from the cerebellum and whatever side(s) the eyes affect.
When my cerebellum shook i heard frequencies.

Maybe the brain ‘sees things’ as if you’re dreaming. As I said Nystagmus is like REM sleep.
It seems like those ‘frequencies’ are the brain’s natural way of going through phases of sleep.
Last part!
I would to stay this discussion to stay, but it seems a little off from what others have posted.
It just seems like Nystagmus is more than vision and is a neurological disorder, possibly preventable and curable. I would love to continue on this site. I haven’t been able to say my findings until I found this great place. Thanks for listening! My real name is Ciara L. Garrity

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