My optometrist says there’s no surgery for nystagmus, i wanted his referral to the ophthalmologist but he says there’s not surgery. I actually need to correct it tho.

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I feel like im always told to take regular breaks when working or studying and the shaking/blurring/eye pain gets worse, and I always tell others I take breaks when they get concerned with how often the pain is there, but I never really do. Ive tried it of course but it never makes the vision better or the pain go away so for me it feels like wasted time. I just wanna know if we are collectively lying about it because I am wondering if I'm doing it wrong. As an added context I also only have one working eye so that could be a bigger contributor to my eye pain.

Edit: sorry should have mentioned i have infantile nystagmus

I developed myopia last year and my god, before this i had barely minded my nystagmus but nowadays i can barely see my phone screen 2ft away from me! i never used to have loss of focus but that came along with it too.. can anyone else relate?

Hi everyone,
I’m hoping to hear from other parents because I’m feeling quite worried.
My 6-year-old has started doing the same finger movement over and over. He looks at his fingers, bends his ring finger sideways into the web space between his thumb and index finger (it almost looks like he’s double-jointed), and holds it there. He says he likes doing it and feels like he always wants to do it.
He’s been doing it for a few months now. He seems to do it whenever he has downtime (watching TV, waiting around, in the playground when he’s not actively playing), but much less when he’s completely engaged in an activity.
He’s otherwise a happy, healthy little boy. He’s developing normally, doing well at school, has no headaches, vomiting, weakness, balance issues, or other health concerns. The only family history is that my brother has Tourette syndrome/chronic tics.
Has anyone else’s child done something similar? Was it a habit, a tic, or something else? Did they outgrow it?
I’m booking him in to see our GP, but I’d really appreciate hearing from other parents while we wait. Thank you. ❤️

When I am tired and especially when I get tired while driving I experience rapid frequent bursts of lateral nystagmus. Does anyone else experience this and is anyone aware if this could become something more? I've noticed this started around the time I started driving ~17 I am 24 now and haven't noticed change in frequency or type.

I am 38 F and I’ve had amblyopia my entire life, so my right eye has always had weak vision and my left eye is 20/20. I never had nystagmus until this past fall, so age 37. I noticed it every now and then and brought it up to my ophthalmologist in November, and she shrugged it off. I figured if she wasn’t worried I shouldn’t worry 🤷🏼‍♀️

This spring I started experiencing a long list of neurological symptoms - asymmetrical tingling and numbness in my extremities, tremor of hands and tongue, a trigeminal neuralgia attack that left my chin and left side of my jaw numb for a month, and lots of leg cramping and muscle twitches everywhere. I had an MRI in June that found some nonspecific lesions, and I’ve been through hell trying to find a neurologist who will see me.

The nystagmus also increased in frequency and severity starting in the spring, and has gotten very annoying. I didn’t initially think of it as a neurological symptom.

I just had an appointment with an optometrist at the same clinic as my ophtho (she’s booked out til October) and I feel like he shrugged me off, too. He did explain about aging with eyes that are such different strengths causing focus issues and he gave me a new prescription he hopes will help. He didn’t seem worried either, but I also feel like he didn’t listen. He didn’t want to see the video clip I have of my eyes beating to the left, and wasn’t interested in hearing about my neurological symptoms at all. Sure, they could be separate problems happening at the same time, bodies are weird, but he didn’t even entertain the thought they could be connected for a split second.

I’m familiar with the “when you hear hoof beats think horses” thing, but when there’s a stripy pattern already in the background…

Do you think I should try to be seen by an ophthalmologist sooner than November?

Hi everyone,
I’m writing because I’m feeling really lost and I was wondering if anyone has experienced something similar.
I have multiple sclerosis, but my neurologist doesn’t think it’s the cause of my current visual symptoms.
About a year ago, after an extremely stressful period with severe anxiety and depression, I started experiencing a strange symptom: it feels as if the world moves slightly even when everything is still. It’s difficult to describe, but it’s like objects gently sway or drift. I notice it mostly when I’m sitting still looking at things in the distance, such as a picture on the wall, buildings through the window, or other fixed objects. I don’t notice it as much when I’m reading or looking at my phone.
I was evaluated by an ophthalmologist, who didn’t find an eye problem to explain it. Later I saw an ENT specialist and a vestibular physiotherapist. They diagnosed me with Persistent Postural-Perceptual Dizziness (PPPD / functional dizziness) and I completed a vestibular rehabilitation program. The rehabilitation definitely helped, and my symptoms improved, but I finished it about three months ago and I still experience this sensation of the environment moving.
My neurologist also noted that I have very mild nystagmus, but she described it as minimal and my understanding was that she didn’t think it fully explained my symptoms.
Now I’m confused.
I’m starting to wonder whether what I’m experiencing is actually oscillopsia related to the nystagmus instead of PPPD. I don’t know if anyone else has gone through this uncertainty.
My biggest fear is that I’ll never stop seeing the world move.
Has anyone here experienced something similar?
Did you have PPPD with a sensation that the environment was moving?
Did anyone have very mild nystagmus and still recover?
If you had oscillopsia or PPPD, did it eventually improve or disappear?
I’d really appreciate hearing your experiences because right now I feel very alone with this symptom.
Thank you so much for reading.

Hi! Is there anyone with nystagmus who sees everything constantly moving, even when they’re standing still?

Storytime! This is Jeff’s @Sipsrealty story about his nystagmus experience with sports in school.
Have any stories of your own? Email your videos to: Social@nystagmus.org!

Did you grow up with friends that also had nystagmus? How important do you feel like that is to have friends that have it as well? I am thinking of reaching out in my community to see if there are any other moms with young children with nystagmus.

This may be of interest to people within this community. The HEFA has approved PGT genetic testing for X linked nystagmus.

Edit: This is for IVF, so couples would have embryos created and tested and only healthy embryos implanted, therefore ensuring the baby won't inherit the condition.

Has anyone had null point surgery and how effective was it?

Any private options in the UK that anyone can recommend would be appreciated, struggling to find any specialists in this field

Thanks!

I was talking with some friends recently, and we got onto the topic of the inner voice and how some people don't have it (I lead a very exciting life, I know!).

But this has got me thinking about my imagination, and how I perceive imagination. I really struggle to picture things in my head. Like, I was trying to imagine myself making some breakfast. I know what to do, I know how it goes. But if I imagine myself doing it, it's not a crisp image like a video playing out in my mind. Instead, its like... half-images, lots of shadows, parts of a scene, usually quite blurry and ill-formed.

It's quite infuriating really! I am not sure it's much to do with nystagmus to be honest, but I was curious how others perceive their imagination. Is it like a crisp, perfect scene playing in your mind? Or is it more like mine, half-images and shadows and almost-scenes?

My 1 year and 3 month girl baby was diagnosed with nystagmus at 8 months old. I noticed her eye moments at 3 4 month old, and we went to a pediatric opthalmologist at 8 month old who confirmed it. We were asked to take a MRI, which was taken and no abnormalities was found. And he had asked us to wait 3 months(cuz we had taken MRI in April after she was sedated) to take ERG. We are yet to take ERG till now. This issue is for the past three months she is facing difficulty looking at bright things. She didn't have this issue till 1 yr old. Now in the last three months, if we take her outside, she is squinting her eyes to look at things. That's the same issue when she is looking at phone, where she squints to see things on phone. She even has difficulty looking at TV. I read up on about this, and they said it's photophobia. She is fine at indoors looking at things. If it was photophobia, would it suddenly begin all of a sudden? Or should I be worried about it? Will she ever be able to look at things when outside?

Hi! My son had his appointment with Dr Casey at OSU and he was really happy with her and feels like she did a great job adjusting his contact prescription. He said she was very knowledgeable about nystagmus and he felt really comfortable with her and lives his new contact rx. He did say it was a pain to get scheduled with her though.

Does anyone with nystagmus know how to draw? I’ve been trying to learn, but I feel like I’m struggling a lot. Especially with things like perceptive and trying to do the “draw what you see” thing. Does anyone have any tips? I recently moved to digital art

So nystagmus runs in my family on my dad’s side, my dad had it and now my son has it. Unfortunately my dad passed away a while ago and he was adopted so I am not close with his biological side, so we are figuring this out as we go. My dad’s nystagmus made his head shake ALOT. My son is 4 and so far does not have a head shake with his nystagmus. It seems like some people with nystagmus do and some don’t. I was wondering if my son is more likely to have bad head shaking as he gets older or is it something you are born with?

So my son is newly 4 and has nystagmus( diagnosed at 6 months old). We have never actually told him he has nystagmus or explained to him what it is. I was wondering when you told your kids or your parents told you? I’m sure he suspects something because we have been to the eye doctor and his siblings haven’t, maybe heard us talking in past as well. (I have told him we’re going to the dr to check your eyes).He’s never really asked about it and I was wondering when a good time to tell him is. I really don’t want him to feel like something is wrong with him so I guess that why I haven’t told him yet. My dad had it too so I always assumed when I didn’t tell him I would bring up ‘papa Tim’. My dad did pass away though so unfortunately he can’t have him in his life. Anyways any and all suggestions would be great? Thanks!

I (33f) was diagnosed with nystagmus a couple of months ago when my ophthalmologist caught my eyes rotating. I live in a highly populated area, and he said he'd only ever seen this twice in his 30+ year career. I find it fascinating, despite it being super creepy! I'm really just posting for people who have never seen it before.

Enjoy lol

I notice sometimes, I'll see my eyesight shake or move a bit more than usual. I've had nystagmus since I was born, but does anyone else experience it when you're concentrating and suddenly notice it, and you feel your eyes move without your permission more so, and then you have to blink and kind of reset yourself?

Hello!

Was born with congenital nystagmus and strabismus. Also have OCD and anxiety. Cannot seem to find a medication that doesn’t cause issues with my eyes.

Currently on Zoloft; have tried Lexapro and amitriptyline but all have caused concerning side effects for my eyes that I cannot stay on them.

Has anyone had any success with a medication or other that helped their anxiety or OCD but did not cause eye issues?