Anyone else deal with nystagmus?

[Raingrrl]

Nystagmus is one of my daily companions and causes me all kinds of trouble. I'm wondering if any of you have it and have any tricks for coping with this annoying symptom.

[Blcasey279]

Raingrrl@

I'm sorry to say I don't know what that is. But I'd like to hear about your experience with it. I'm going to google it.

blcasey279 (Brenda)

[Karen-x]

So sorry you have that. It seems like it could be very annoying. How bad is it?

[Raingrrl in reply to Karen-x]

It's horrible. It makes reading difficult because the side-to-side motion your eyes make when reading is extra fatiguing for me. My body works hard to compensate for the irregular eye motion caused by nystagmus.

It also means I restrict my driving to mostly 2 lane or 4 lane roads. I only occasionally drive on a freeway but never in heavy traffic. I have to be careful to not put myself in a situation where my eyes are overloaded by too much to track. As a person that lives solo, you can imagine how much this impacts my life.

The harder my eyes work, the more fatigue I feel. The more fatigue , I feel, the worse my eyes are. It's a vicious circle that can also bring on vertigo and balance problems. Such is my life with MS.

[dmaskal1]

I had double vision which a neurologist-ophthalmologist corrected for me by prescribing prism lenses. Maybe a neurologist-ophthalmologist could prescribe contact lenses to help control your nystagmus? I hope you find a treatment to help you!

[Raingrrl in reply to dmaskal1]

Thanks dmaskal1 ... I have a great opthamologist but maybe a neuro-opthamologist is worth a try. I've heard of prisms helping but am uncertain if they would work for me. My eye doctor says I have a rare form of nystagmus....lucky me. I also never adjusted to progressive lenses even after 3 months of trying...don't know if that predicts anything about me possibly adjusting to prisms.

[agate]

@Raingrrl, as dmaskal1 said, prism lenses seem to help some people.

Over the years I've found that keeping my head stable seems to help. For years I wore earmuffs when I was out in the cold. They kept my ears warm but they also stabilized my head if they fit snugly enough. For me nystagmus got worse when I was walking, particularly if I had to make a lot of turns, as when going up and down many aisles in a store. If I slowed down, that helped. Walking with my hands in my pockets also helped. Turning my head as little as possible also helped. I know all of these ideas may sound nutty, but they were what helped me. Everybody has to keep trying ways of getting along with some MS symptoms, and sooner or later you'll find a few ways that work for you.

[Raingrrl in reply to agate]

Thanks agate ... I try to limit turning my head a lot too. I experience the same as you when I'm walking and have to make a lot of turns or just have to turn my head a lot to look for things like in a grocery store. I do try to turn my head as little as possible in these situations. It can be so awkward at times just to do simple things like grocery shopping! These situations are examples of why nystagmus increases my fatigue depending on my activities.

OT....did you used to post at MsRefugees? I remember someone using the screen name agate posting there a long time ago.

[agate in reply to Raingrrl]

I've got into the habit of not turning my head much. If I do turn it, I try to turn it slowly.

Even riding in a vehicle that is making quite a few turns can set off eye problems for me.

Yes, I did post at MS Refugees for a while. Were you Raingrrl there? Sorry I don't remember you from there!

[Raingrrl in reply to agate]

Yes.. I've posted there but not much. I used Raingirl instead of raingrrl. I decided I prefer the raingrrl screen name and now use that instead.

[angelite]

Hi Raingirl,

I had a brief bout of this 4 years ago - luckily only lasted a few days. Reading was v. difficult due to eyes jigging back on words. If I looked to the side with my eyes, not turning head, the side to side movement was more noticeable and a bit painful. I was feeling quite unwell with other symptoms at the time so wasn't going out/moving around much - I imagine it presents many problems in everyday life. I do hope you can find some help with this, the glasses/contact lens route seems to be favoured.

aao.org/eye-health/diseases...

Angela x

[Raingrrl in reply to angelite]

Thanks for the link Angela

[mayestas]

I take high doses of Gabapentin it helps a little I just have to deal with it it sucks. I heard that there are surgeries for severe cases. My left eye is much worse than my right my right only does it when I'm really tired left eye does it all the time I know your pain best to you

[Raingrrl in reply to mayestas]

Hi @Mayestas!

I read an article by a local neuro-ophthalmologist that said that high doses of Gabapentin help but the article didn't mention the dosage. I was first given Gabapentin by my primary care doc off label for hot flashes of all things. When I started having trouble with neuropathy in my legs by the end of the day she increased the night-time dose. Its doing nothing for the nystagmus.

My right eye is the worst in my situation. Nystagmus is there all day long but I only "feel" it in my left eye when I'm really tired. Because it affects my peripheral vision in my right eye, I try my best to park my car so that I'm backing out to the left. or pulling out to the front. Backing out to the right is not a good thing.

[Stepinup]

Raingrrl,

I am being tested for MS along with nystagmus. I just got tested yesterday with the VNG test. I noticed that you do things to try to ease the burden that I do as well without realizing it. I also where a hat when my eye symptoms (spasms start up) it just feels like I need to steady my head. Which helps a lot. I have many different hats that wear depending on the weather here in TX. I also stay away from my phone and tv because the horizontal eye movement really fatigues my eye making it painful. I have found that putting ice on my eye minimizes the horizontal pain that I feel. I wear eye glasses So I have to clean them every time something is on them. Just having a smear or eye lash on the lens makes my eye go nuts!

After reading your post I ran to my husband saying...she does the same things that I do! He was bewildered by this because he is now thinking that MS is highly likely.

I don't understand as to why the hats help me but I find it soothing.

Hi hope your day is going well for you!

Stephanie

[Raingrrl]

Hi Stepinup !

I don't wear hats generally because I have baby fine curly hair and get hat hair really bad! Having said that, you are the second person to suggest wearing something on the head that makes it feel more stableft so I'll try it!

The nystagmus came on with the worst flare up I ever had. I also had severe vertigo from the flare up. They put me through a VNG test and it was not that helpful. It made me so dizxy, I was sure I was going to get sick. Thankfully the vertigo mostly went away but the nystagmus stuck around.

I also wear glasses for distance and have to make sure they are clean too. I have the same problem with watching TV that you mentioned. Anything requiring that side-to-side eye motion can be a problem for me. I no longer like to go to the movies for this reason.

[BillD999]

Hi Raingrrl, I sometimes experience that same symptom, but not nearly as severe as you. You may have already seen this - allaboutvision.com/conditio...

Good luck!

[Raingrrl in reply to BillD999]

Hi BillD999 ...thanks for the link!

[Hjr4]

I was having dizziness for six weeks 24/7 and went to my primary care doctor to have it checked out. She said it was most likely an inner ear infection and gave me meclizine and said come back and see her in six weeks if it did not get better. It did not so I went back to see her and she was still convinced it was an inner ear infection but said to mention it to another doctor I was seeing who happened to be a neurologist. Turns out I have nystagmus and it has never gone away since my diagnosis of MS in 2009. This can be a symptom of MS.

I have not found anything that seems to help the symptoms of this, and noticed that driving turns on the freeway makes it worse or on a windy road .

I do not have vertigo but I do have the sensation of my head feels like it's stuffed with cotton not sure if this is part of it or something else that I am experiencing not related to the nystagmus

[Bubbles52]

I don't have have it, there are 4 types and if you acquired it after you were diagnosed with MS then it is Acquired Nystagmus. If you had it before MS then maybe you should see your eye doctor and primary care. ;- )

[Raingrrl in reply to Bubbles52]

Hi Bubbles52 ...thanks for the response. I have aquired nystagmus caused by MS -- likely by the lesion in my brain stem. And lucky me, I have a rare form per my ophthalmologist.

I posted this to see if anyone else had it and maybe had suggestions for treatment that I hadn't seen before. My neurologist is fully aware because its one of my most aggravating symptoms and I bring it up at each visit. In the recent Dr. Q & A we had here, Dr. Singer confirmed that Gabapentin can be used as a treatment for it and gave me the dosage range that I had been looking for. I'll be bringing this up at my neuro 6 month checkup up later this month.

[WonderMom]

Raingrrl@

Hi, yes I have that very same problem. My eyes were giving me such a problem. My opthomologist prescribed Prism glasses. I was worried they would be super thick and doubted they would help.

They are awesome! And no one sees the difference ( I have worn glasses for awhile).My world went from 2D to 3D instantly! It felt like they widened my field of vision. And I have much fewer headaches and no eye pain.

Try prisms they usually help, good luck 😉

[Raingrrl in reply to WonderMom]

Hi WonderMom ! I have heard of Prism glasses. I probably should ask my eye doctor about them since you said that they aren't super thick.

I've been hesitant to try the prisms because I'm nearsighted and wear standard single vision glasses for distance only. When I've tried progressive lenses and bifocals, I can't adjust to them. I'm not sure if its some failing in my brain or what. They make me feel like I'm looking in a fun house mirror so I can't see properly and after awhile of those kind of weird vision affects, I have vertigo and am nauseous. I've tried the progressives lenses and bifocal lenses for 3 months each before I just gave up. My eye doctor said that some people just can't get used to them so hasn't made me try them again.

Today is a warm enough day here that I'm not feeling great and it seems to have ramped up my nystagmus symptoms too. Having wobbly vision today is really irritating. Maybe I can get the scheduling people at the Eye Clinic to move up my appointment.