Do any of you have nystagmus?

I was born with cataracts. My doctors waited until I was seven months old to remove them. They know now that this is a big no-no, and that they should be removed ASAP. Anyway, because of the wait, I developed nystagmus. I know that nystagmus can also be associated with MS. That's not why I have it, but I was wondering if any of you with it are able to treat the condition? Up until recently I've always been told "There's nothing that can be done about that..." Now I've heard that sometimes the muscle is clipped in the eye. Also, botox is being injected every few months. Have any of you guys tried any of these things? Have you had any luck?

Thanks!

Hello,

I don't know if you read my intro a few days back, but yes, I've had nystagmus. It developed along with BPPV which came on two weeks after I had a sceleral buckle (silicone band) surgically implanted around my left eye for a retinal detachment 3-1/2 years ago (also when the MS symptoms came on).

The BPPV was atypical & did not respond to treatment. They insisted that was what the nystagums was from, and it did get better over the course of a year, though some residual nystagmus remains that they told me I was probably born with.

It's not as much of a problem for me as it sounds for you - but in the course of me researching all these symptoms of mine, I did read about the muscle clips. One side-effect from that I read, is that the eyes might no longer track together but separately. This could create vision problems and/or dizziness/balance problems.

The Botox I've read about for other symptoms, and sounds like it would have much less potential for side-effects, and any that one did experience, would be temporary vs. the permanence of the muscle clips.

Just my 2cents - I've had six eye surgeries altogether, and sometimes that is the only option. Hope you have a really good eye doctor you trust, as that surely helps.

Take care & good luck! :cool:

Thanks very much for getting back to me. Yes, I do remember reading about your nystagmus in your intro.

I also remember a doctor telling me at some point that their were potential negative side-effects of getting the muscle clipped. I definitely don't want to put my vision in jeopardy because it's terrible as it is!

I was thinking that the botox might be worth a try- even if I do have to keep getting it done every few months. Actually, I should probably wait until I have a little extra cash lying around first ;)!

I appreciate your "2cents" very much! :)

Take Care.

Hi again,

Have you ever had an ENG (a test that shows nystagmus readouts)? I had several, and I remember the audiologist told me a few things about nystagmus patterns and the way they present. If the nystagmus occurs in certain positions and then "settles", it tends to indicate an inner ear problem.

But she said if the person has a CNS problem, the nystagmus may be triggered by a certain position or stimuli but will not stop - she could send that patient home and see them again in four or five days and they would still be experiencing nystagmus. Although she didn't get into what kind of CNS disorders would cause such a thing (I think she did mention stroke and head injury), I was wondering if maybe nystagmus of that kind would be an indicator of MS?

If you haven't had an ENG, it might be one test your doctor could order - the test includes a lot of visual stimulation to see if that evokes nystagmus as well. Also, the direction and patterns of the nystagmus are meaningful, and the test would measure this.

Hope this is helpful.

kelpie

Thanks very much. I'll talk to my neuro. about it next time I go back. Actually, I won't wait that long. I'll probably get on the net here soon and start checking things out :). I'm not sure if my situation is the same, though, since I've had the nystagmus beginning in infancy. It's worth checking on, though. I also worry about some of the meds my neuro put me on. One of the anti-seizure meds I was taking can have nystagmus as a side effect. I don't know if my new one (Depakote) does or not...

Thanks very much!

Acupuncture and an OTC medicine called myclazine have greatly reduced my nystagmus which is due to my MS DX.

Sunshine,

I would be willing to try acupuncture, so thanks for the tip. Also, I have meclazine as well. I have only taken it a couple of times, and it always makes me go to sleep, but I'll be sure to pay attention to whether or not it helps my nystagmus. Does it only help when you take it, or has it made actual changes for you long-term?

Thanks again!