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Nystagmus

Hi Just back from seeing ophthalmologist at hospital who has referred me on to a specialist. He thinks I could have nystagmus but he wasn’t happy to confirm it, as it was outside his area of expertise. Mind you not sure why, as last time my eye right eye had problems, possible ON, I was told it would get better on its own anyway. My left eye has been starting to twitch and now I get short bursts where my vision sort of quivers from side to side making words jump from side to side if reading when it happens. Anyone else had experience of this? Does it usually just clear up on it own? At the moments it’s only happening a few times a day but it has very slowly been increasing over past few days and wondered how it had effected others? Thanks for your help Mish x

hi mish, my dad has had ms for years, and with it a twitch/very rapid flicker in one of his eyes. it is not constant but happens many times a day. i’m afraid he has had it for a good many years and has been having botox injections to keep it under control. sorry if this is not what you were wanting to hear xxx

I had nystagmus and it was pretty bad at the time but it cleared up after about 10 days. I understand it can be tricky to treat but with all things ms it’s different for everyone. I’ve heard botox may help too. It’s horrible but hang in there x

Forgot to add I did have a 3 day course of steriods as I had double vision and loss of vision as well. There was no mistaking Nystagmus with me. My pupil was spinning around like it was being remote controlled by someone else :frowning: horrid.

Thank you for your replies. Don’t really know much about this symptom and was keen to hear from others who have experience of it, so thank you. At least at the moment when it happens it is over quite quickly. Guess I will have to wait and see how it decides to affect me…hang around or clear up. Fingers crossed for the latter : ) Mish x

I’ve had this from time to time but has completely gone now so all is not lost! X

Ah thank you Claire. Hoping it clears up on its own : )

i had an eye test a few weeks ago as have noticed it was more difficult to focus on text on a laptop screen/ tv screen small text, and slightly so reading newspapers/books

the optician suspected nystagmus to which i saw an ophthalmologist who said they too saw the nystagmus but wasnt as confident in giving me the diagnosis, that im aware of anyway

I saw a optician for glasses and she told me, as i drive, that i was on the borderlimne of having too poor vision to legally sdrive, this surprised me very much as i have never had diffiulty with my driving vision or ever had a crash

i am due to test some glasses next month but the optician wasnt too confident they would help my visiom.

Now this scares me as i need my car (wheelchair user so have hand controls in the car) to get about and be independant

So i was hoping someone with nystagmus or knows of it, had any natural remedies to treat or manage, even temporarily for my test. or even were aware of things or times where their vision improved

I think ive had this nystagmus for 3 years but just ignored it and enlarged the text when reading the screen, as this is when its only noticeable

i went to boots who said there was no drops or anything that could help the nystagmus, i already follow a very healthy diet witth lots of supplements

Hi, I had this. Knew something was slightly peculiar with vision, but only found out what when I read the letter from the hospital. Also had double vision & struggled with sitting in front of a screen all day at work. I have been seeing an ophthalmologist & orthoptist since October & was discharged last week. It’s taken 9 months to resolve. Hopefully over time it will be the same for you. Anne

how often were you seeing these eye specialists zigzag?

what did they do to resolve the condition? i thought it was untreatable?

Hi Adam Just looked at ms society publication on eye problems. It suggests for some people gabapentin, among others drugs, can help but goes on to say usually drugs are not very effective for visual problems like nystagmus. I am already on gabapentin so I guess that rules that out for me! Mine is more annoying than a problem so far, hope yours doesn’t stop you driving. They tested my vision at hospital and it is fine for driving, I think. I avoid driving in the evening anyway which is when it is giving me the most problems, I guess because I am tireder. Mish x

Hi Adam, I saw the ophthalmologist twice & orthoptist three times in the past 5 months. I take a fairly hefty dose of gabapentin (2700mg daily) and was at only slightly lesser dose when I developed nystagmus. It was mild though & not apparent to the casual observer. Nothing was done to resolve the condition, but I had had a course of steroids just before I saw both specialists. The double vision was more troubling at the time. Thankfully this has resolved too. Anne

Hi Adam

Usually Gabapentin or Mematin though depending on the licensing and area you’re being seen in getting hold of these drugs can be a trial at times as they weren’t specifically developed for nystagmus. They do have some sideeffects (dizziness/disoreientation etc) but as you’re in a wheelchair you would be more suitable than someone who was more mobile. Make sure you check what the driving standards are and ask your optician where you sit according to them - they have changed recently and the criteria has been lowered (though I would expect the optician to be on the ball with this).

Good luck

Reemz

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