Nystagmus has been part of my MS since the time of diagnosis (1980) but it calmed down for many years. Sometimes it would be mild enough--I'd be going up and down the aisles of a supermarket and suddenly I couldn't read the labels on food packages. I'd nearly stand on my head just trying to read anything. But if I stood very still for a little while, it would get better.
The bad episodes happened when I'd be walking along and suddenly my eyes seemed to be whirling around in my head. There was no way I could do anything for as long as that lasted. I would grope my way to the nearest wall or pillar and just brace myself against it and stay perfectly still, propping my head against that vertical surface. I don't know how long it took to calm down, maybe half an hour, and then I'd be on my way.
I went to a wheelchair for distance travel a few years later and had no more bothersome nystagmus problems.
Then about a year ago I had had a flu shot but had travelled to the medical facility and back in my wheelchair, using a paratransit van as usual. I was back in my apartment building, heading toward my apartment in the wheelchair--and suddenly a very bad episode of the whirling eyes came on again. Luckily I was in a location that I knew my way around very well in and had only a short distance to get to my apartment. It took about an hour of staying absolutely still for this one to go away.
I'm still being careful but don't know what caused this or how to prevent it. It seems like a dangerous symptom to have as I am suddenly unable to see when this happens.
Does anyone here have any advice? I asked the eye doctor, and all he said, "Yes, it can be difficult to focus your eyes when that happens."
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agate
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My dr wasn’t any better! Wheelchair is a great idea! I have one too 🙂. I mostly look down when that starts to happen, cause I can’t focus a way! I can’t even look out the car window anymore! It sucks. Sometimes, like now, it becomes very difficult to focus on anything
Xvettech, the wheelchair came into my life on account of walking difficulties, not because of the eye problems, but I did notice that I had no more nystagmus issues after I started using the wheelchair. When this latest episode happened, though, I had been in the wheelchair for some hours.
my wheelchair came into my life due to the ability to walk went away. I’m so sorry to hear about the disturbances with your eyes. I hope you get it sorted out easily & soon!
I've never had that, but I'm so sorry that you're having to deal with that, agate. I hope that someone can help you find a strategy to deal with it. Best of luck. ❤️
Oh my goodness, my heart goes out to you… although I've never had what you… I did have a severe eye twitch that was so bad that my right eye would close basically 3/4 all the wile twitching like crazy.. I was still healthcare and I remember not being able to look at my the face for fear that my eye would start twitch.. many times it would happen when I would be starting an IV.. I was usually able to compensate and get my IV started, but imagine the lack of confidence in somebody if they saw my twitching like crazy.. I went to my neurologist about this, and he said that we could inject Botox in my eye… But at the same time in my life my husband was just beginning getting treated for his sleep apnea. Once he got on the CPAP my interrupted sleep went way down, and my eye stopped twitching on its own.. once in a while, it will come back. It seems to be related to fatigue now. Your eye situation seems way worse and I pray it will be a simple solution.. wishing the best for you and hope to hear back soon how things are going
CatsandCars, thank you for the link! I'll be exploring it.
AquaZumbaFan, I'm so glad that getting more rest caused your eye twitching problem to improve. I don't know how many times I've noticed that fatigue makes some of my MS symptoms much worse. Getting enough rest and sleep is at the top of each day's list of priorities for me. It's not always easy but I can't get through the day very well at all if I haven't had enough sleep.
I am sorry- this also happens to me. I have gone to several doctors asking the same question what do I do and all say we don’t know.
I did once read an article that it has to do with the brain stem and pesky lesions. It didn’t have any advice except to break close your eyes rest them for a bit and see if that helps.
if you do discover something that works, please share! It is a very annoying symptom.
I found that shutting my eyes and bracing myself against a solid vertical surface, like a building wall, so that my head was supported, and staying absolutely still--especially not moving eyes--seemed to help. And you're right about the brainstem, I think. The neurologist who diagnosed my MS sent me to an ENT doctor, and I spent a whole day having a lot of tests at the ENT doctor's. Electronystagmography was one of the tests. It indicated a brainstem lesion causing "right-beating nystagmus with directional preponderance." The nystagmus experts have classified it in various ways.
I've been going to this eye doctor for 15 years and he is part of a vast local eye-care chain. He's OK for routine diabetic eye exams and glasses rx's but mainly he keeps promoting cataract surgery for me, and since I'm not interested in that just now, he pretty much glosses over any other problems I ask about. It's just the way it is, and I'm too lazy to look around for another eye doctor though I've been giving it a lot of thought for quite a while.
I did speak to the neuro and she was concerned but wanted to take a "wait and see" approach. Or maybe it was "wait and hope you can still see."😎
Grrr. If doctors would only experience what we do, they would sing a different song! When you're ready, I've had one cataract out and it was easy peasy!
oh my that is all the doctor said ,that is terrible ...no explainations about it and how to maybe be able to avoid it again ...wow scarey ...i have had it mildly when i have done to much or gotten over heated ,at least i think that is what happened ...i guess i will have to write it down and ask my doctor if happens again...be safe ...have a wonderful Christmas an New Year....
I’ve had nystagmus since a big flareup about 15 years ago. It was so bad that I’d getvertigo along with it anytime I looked around a lot like during shopping. It would be triggered anytime I looked up or to the right side. I had to careful park in angled parking so that when I backed out, I didn’t have to look to the right that much. Over the years it has calmed down but I’ve also learned to accommodate it. My eye doctor that retired told me I have a rare version. Yay me! As far as I know there isn’t any treatment other than eye glasses with prisms I wasn’t offered those because of the version I have
I empathize with you! I hope yours calms down soon.
Raingrrl, now that you mention it, there was vertigo along with it at times, and I learned not to look up or to the left but for a long time that seemed to be impossible, worse sometimes than others.
Congratulations on having something rare. That must make you feel so special.⭐
I keep an rx for meclizine on hand at all times in case the vertigo comes back. I had it very badly when I was 20 (long before MS was in the picture but it may have been the first sign of it) and knocked out 4 front teeth as I blacked out and fell face forward. I wonder if meclizine or one of those other anti-vertigo drugs would help you? I've found that sometimes it helps and sometimes it doesn't. Not sure if it would do anything for the nystagmus but vertigo and nystagmus are often related.
I also keep some meclizine on hand for vertigo. Thankfully, I don’t get it often. I know that the nystagmus, vertigo and balance issues I have are from an especially “lovely” lesion on my brain stem.
wow, talk about empathy! it can be difficult, but deal with it?😡 i don't have whirling eyes. mine just sort of jitter to the sides constantly. i tend to close one eye when i read. i don't suppose that might help you?
Honestly, that sounds like a version of nystagmus. Have you ever talked to your neuro about it Blanketttime1 ?? Not that they can do much to help with it.
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Wonky Eyes
tingling in my head 
Numbness 
Can't keep my eyes open!!!
