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Blind and Visually Impaired Community

Full History - 2021 - 02 - 18 - ID#lmstuz
8
One of my eyes kind of shakes or wobbles in the morning after I wake up (self.Blind)
submitted by kelpangler
I have this quick oscillating movement which usually occurs in the upper right corner of my right eye. I only notice it after waking up and opening my eyes. Normally it goes away after a few seconds but sometimes it can last for maybe 30 or so seconds. I’ve told my doctors about but they’re not sure. My happens to be an optometrist and she’s been able to observe it happen once. It seems to be affected by light because it goes away if she shines on it. We found a condition called oscillopsia on the John’s Hopkins website which seems to be related to inner ear problems. But with that it’s the wobbling which causes physical blurriness, not blurriness by itself. Has anyone heard of this?
niamhweking 3 points 2y ago
Could it be nystagmus? I recently have started to noticed my eyes at night flickering up and down, just when I am very tired.
[deleted] 1 points 2y ago
I’m sorry about my other comment I didn’t check your profile before I commented I didn’t realize you are already blind.

There really isn’t a general sub for minor vision impairments eg. Nystagmus, amblyopia, albinism etc. etc. there are subs for those each specifically but they are sub 1k members and mostly inactive so I’ve gotten used to people asking about them on here from time to time which is mostly why I’m here, people questioning if they have any of those or paranoid their going blind when really they just have one of them (like that guy asking about amblyopia on here the other day), seem to post here on occasion, again I’m sorry I didn’t check your profile I though you were some dude who didn’t know where else to ask.

I’m trying to think of how you can tell if you have nystagmus since without being able to see I’ll get back to you when I think of something. I’ll leave my other comment up in case anything in it is of use to you.
kelpangler [OP] 1 points 2y ago
Hey no worries! Just the fact that you tried to correct yourself is a big internet win. The vast majority of times people just dig in their heels deeper.

Yeah my central vision is totally blurred and then it spreads out from there. I use my peripheral vision to see details. Another sucker punch is I’m now colorblind where everything is brownish yellow. Except blues! Those are almost neon at times. We still don’t know the cause.
[deleted] 1 points 2y ago
Hi! I’m someone who has nystagmus, it sounds like you might possibly have nystagmus, it is a quick involuntary eye movement, most people with it are born with it however it is possible to acquire it either through another medical condition or through trauma of some kind.

I’m not a doctor or anything but I can tell you how it effects me and what signs you should look for.

You say your eye only wobbles a little bit and it’s not constant? Start paying attention to any changes in your vision all the time not just when the wobbling is noticeable, with nystagmus the speed of the eye wobble as well as how far it is going actually is largely effected by things like stress, anxiety, excitement, tiredness etc. so it is a possibility that you have nystagmus and you only notice at certain times, also you won’t notice your eyes wobbling in the mirror because your brain corrects the image for you so you’ll need to use like a phone camera or ask someone around you. My nystagmus is constant, my eyes have just a slight quiver most of the time and no one really notices however when I’m tired or anxious it does get worse and more noticeable to others.

Your vision won’t become visibly blurry (At least not due to the nystagmus alone most people with nystagmus like myself do have another condition that causes both blurriness and nystagmus) but you will notice your depth perception and speed perception is basically non existent, also if you are in school you will have a very hard time reading the board as well as reading text in general. For me I have a hard time catching things and sometimes I have trouble with stairs and stuff because while vision mostly isn’t blurry your ability to perceive things is impaired, when I play airsoft with friends I basically can’t even aim accurately until I’m pretty close up even though I can see what I’m aiming at just fine.

So basically pay attention to if you seem more clumsy than usual or your balance seems off because that’s a good indicator you might have nystagmus.

Nystagmus is on a spectrum like a lot of things so it could be super mild to were you basically don’t even notice it ever or it could be severe enough to were you can’t drive or read books or stuff like that.

Basically just keep close tabs on it, it’s not usually something that gets worse however if it is acquired and because of an injury or other health condition then it is possible it could get worse.

If it does turn out you have it or a condition similar, since it seems like the symptoms you describe are very mild and only noticeable at certain times it shouldn’t even affect you at all, depending on where you live you might have extra paperwork or hurdles to get a drivers license but actually getting a license isn’t hard unless it get worse and actual starts to impair your vision. Depending on where you live just the fact that it’s on your medical record might cause extra hurdles for joining the military but honestly unless it’s severe you’ll probably just forget you have it after a while.

For me my nystagmus isn’t mild but it also isn’t severe and I’m so used to seeing stuff like this that i forget I even have it in most circumstances.

Again I’m not a doctor I’m just trying to tell you the things you’ll probably notice if you do have it. I recommend you check out r/nystagmus as it has more details.
kelpangler [OP] 1 points 2y ago
Thank you for your detailed thoughts. I did have balance problems for months after I lost my vision but the last couple months it’s been mostly fine. Also, I had a concussion that knocked me out when I was a kid that my doctors have wondered about.

Is nystagmus genetic? I had a couple genetic tests done to see if I was a carrier of certain diseases. I don’t remember which ones were tested for but they turned out negative or inconclusive. Another test we’re waiting on is for Leber’s but I don’t recall reading about these symptoms related to that.
[deleted] 1 points 2y ago
Nystagmus is usually genetic, it can be acquired by trauma ie. a concussion or something similar, also if you were born prematurely it could cause nystagmus since the eyes are the last part of the body to fully develop.

In your case since you are blind already i don’t know how much it would affect your balance since the unbalance is mostly due to perception issues and whatnot so depending on how much of your vision is gone or not you might not experience those issues.

Nystagmus is a neurological issue rather than an actual issue with your eyes so maybe if it turns out you don’t have nystagmus then maybe you have some kind of eye motor problem.
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