r/nystagmus

I have acquired nystagmus that my neurologist hypothesizes is due to nerve damage. I’ve noticed that since I’ve started some new med increases (more topamax and more gabapentin) my nystagmus is all over the map. Sometimes it’s like it’s barely there, sometimes it’s still very intense. It’s still awful when it’s dark/at night no matter what, but I’m just confused. I see my ophthalmologist on Thursday and I don’t know how to explain this to him?

Hello, I have been using eye glasses to see all my life (24f) and I genuinely wonder if contact lenses are okay for our eye condition too? Just wanna know if anyone here is using contact lenses.

I have tried before getting one but the doctor says it would only be for decoration and would not help with clearing my vision.

Edit: thank you for your insightful comments! It does mean a lot and I do appeeciate the effort you put in sharing your experiences.

For context, I do have congenital nystagmus + astigmatism and I have never encountered anyone personally who got the same condition as ours and even the doctors I went to doesn’t seem to know what to make of it so gathering info about experiences of peeps who got this is difficult. so again thank you and bless you all!

Hi,
I just heard of this type of surgery and can’t find anything about it helping Nystagmus other than google AI. I’m hoping anyone here may know something before I get my hopes up like I did for LASIC.

Hi everyone,

I've been thinking about this a lot lately, and I'd really love to hear your thoughts.

With how quickly medical science is advancing—gene therapy, stem cell research, AI-assisted diagnostics, and new neurological treatments—do you think it's realistic to hope that nystagmus could one day be completely cured, rather than just managed?

I know that nystagmus can have many different causes (congenital, acquired, neurological, etc.), so a single cure may not work for everyone. Still, I wonder if future research could eventually make complete treatment possible for at least some types.

I'd love to hear from people who have:

• Been following the latest research.
• Spoken with specialists about future treatments.
• Lived with nystagmus for years and have their own perspective.

Do you feel optimistic about the future, or do you think treatment will mostly continue to focus on improving symptoms rather than eliminating the condition?

I'm genuinely curious about your opinions and experiences. Thanks in advance for sharing.

Does anyone have a recommendation for a doctor that specializes in adult nystagmus in the US (preferably in the Midwest)? All the recommendations I find are for pediatrics. I've had it since I was a baby but its only ever been monitored. I'm curious to see if there is anything that can be done to help me.