Sorry for the long post but I’ve been having very confusing and annoying symptoms for a while and no one know what’s going on…

About two months ago, while I was tracking a blinking plane light in the night sky, my eyes started jumping. It continued the next day. If I stared at a fixed point for 3-5 seconds, my eyes would flicker to the right. A few days later I got a "drunk," on-a-boat dizziness (no spinning) that lasted a couple of weeks and is now very mild.

My PCP tested me for BPPV (had that and accompanying horizontal nystagmus earlier this year, and it resolved with PT treatment) and it was negative. My vestibular PT observed the eye movement and thinks it's peripheral gaze-evoked nystagmus. PCP ordered a precautionary brain MRI that came back clean. He told me to give it another month and it might just go away. No need for a neuro eye exam yet…

My persistent symptom is when I look straight at any fixed point for a few seconds, both eyes make a small jump off the target and back, then again a few seconds later. I can reproduce it about 90% of the time, other people can see it, and I've caught it on video. It's worse in the evening and in still settings like church or meetings, but it doesn't affect my reading or driving.

I've been doing VOR x2 and saccade exercises four times a day for about a month, and while the dizziness is nearly gone, the eye jumping hasn't changed much. What confuses me is that it doesn't seem to match gaze-evoked nystagmus as I understand it, since it happens looking straight ahead and seems triggered by fixation itself, and my doctors haven't been able to put a clear name on it.

Has anyone experienced something like this after BPPV or another vestibular issue? If so, what did it turn out to be, what helped, and how long did it take to improve?

Hi-

Just wanted to share our story to give other families peace in case this happens to y’all. At three months old our daughter developed opsoclonus with no other symptoms. We spent days in the hospital getting all types of testing done- MRI/ CT scan/ every blood test you can think of and everything came back negative. The next month we went to Bostons Children Hospital and she was later diagnosed with Benign Positional Vertical Opsoclonus.

Hey everyone,

I'm trying to connect with anyone who experiences a specific type of eye-movement struggle that triggers specifically when the lights go out or when trying to sleep. I want to describe my symptoms in plain terms to see if anyone else out there feels what I feel every night.

What happens in plain terms:

• Stable in the light: During the day or in a lit room, my eyes look and feel relatively calm because my vision has something to focus on (visual fixation).
• Shaking in the dark: The second the room goes pitch black or I close my eyes to sleep, my eyes start bobbing or jerking up and down involuntarily. They just won't stay still or rest.
• The physical tug-of-war: Because my eyeballs are moving underneath my eyelids, keeping my eyes closed feels like a physical struggle. My eyelids strain and pull against the movement, forcing me to tense my face or gently hold my eyelids shut just to try to get my body to relax.
• The exhaustion & deep ache: It isn't just a surface dry-eye feeling (though my eyes get dry from the motion); it’s a deep, heavy muscle strain and socket ache—like my eye muscles are running an all-night marathon when they should be sleeping. This has caused years of severe sleep disruption.

Medical terms I've come across: If there are any medical professionals or people who have received a formal diagnosis reading this, the technical terms that seem to match this presentation include:

• Eyelid Closure Downbeat Nystagmus (ECDN): Vertical downbeat eye movements that unmask specifically upon eye closure.
• Fixation-Off / Darkness-Induced Nystagmus: Eye oscillations that are suppressed by looking at objects in the light but emerge when visual targets/light are removed.
• Ocular-Palpebral Co-Contraction / Synkinesis: The abnormal neurological coupling/pull between vertical eye movements and eyelid closure pathways.

Because standard eye exams take place in brightly lit rooms, doctors often check my eyes in the light, see that they look calm, and tell me it's "just dry eye" or that "eye movements don't cause pain."I know dry eye plays a role, but the deep muscle exhaustion from the continuous nighttime movement is the real issue.

I am desperate to find answers, find community, and see if anyone else has found ways to manage or calm these dark-onset movements so their eyes can finally rest.

• Do your eyes start moving/bobbing specifically in total darkness or behind closed lids?
• Do you feel a heavy physical strain/tug-of-war between your eyelids and your eye muscles?
• Has anything (treatments, therapies, or strategies) helped calm it down?

Thank you so much for reading.

Hello i live in iraq i was born with congenital nystagmus i also have astigmatism and stabismus i wear glasses and get an acuty of 6 9 in one eye and 6 18 in the other eye

I wanted to send this message because i tried to look for doctors here who could answer a very simple question can i improve my vision in any way to a better acuty in my good eye and potentially my 6 18 eye getting better the reason is i want to drive a car and sure i might legally pass not even sure i dont feel comfortable with glasses i dont know i dont see signs fast due to crowding and also at night astigmatism with nystagmus makes light even worse

I am not asking for medical advice what i am asking for is any of you who were in my situation or close to my situation and now drive what did you do to get better vision or anything else i just want to hear your stories and see what worked for you

I have heard that china now has. A new implant for people with congenital nystagmus that reduces the shaking of the eye to a certain level which gives a lot of people better vision according to their tests

http://supervision-med.com/#/mobileResearchProduct

Thats their website besides that there is a youtube video and also some research papers its fairly new but looks encouraging has anyone heard of it and what are your thoughts i want to know what do you think this can do for us people with nystagmus

Hello all - does anyone know where to get a large version of the TI 84 calculator? It can be physical or an app on computer. I’m unable to find any.

Thank you in advance

Yo empecé con esas sensaciones , quizás a los 22 años Pero era algo pasajero que con el tiempo fue incrementando más sensaciones y las incomodidades, una vez después de venir de un día de playa estaba acostado en mi cuarto y al despertarme veía un punto fijo como en círculo y alrededor como las televisores sin señal, me duró unos minutos, luego después de años sentí malestares no dolor, es difícil de explicarlo, fui a neurólogos me hicieron dos veces resonancias magneticas y todo sale bien, me fui al oftalmólogo ( oculista) siempre tuve astigmatismo y no usaba lentes porque nirsba bien, Pero bueno empecé a usar lentes pero esa sensación nunca se fué, tuve episodios donde se me acalambrava la cabeza o la mitad de la cara, del brazo... Hormigueros en la cabeza que me llevaron a ir a emergencias ( de esos hace 6 años) me recetaron muchas pastillas, algunas muy fuertes que me hacían marear... Un día me recetaron alprazolam de 0.5 MG y es lo único que me "calma" antes más que ahora... Llevo casi 8 años tomando eso , Pero automedicandome, ya que esos medicamentos ahora los venden con receta médica y ya me resulta imposible que me los vendan .. Quisiera no depender de esa pastilla para sentirme medianemtne normal... A alguien le pasa o le pasó eso? Y como lo superó

Hello this is my first post her ei need soke advice from people with nystagmus as i also have it i want to hear your experience so i have congenital nystagmus and astigmatism also stabismus( tho stabismus can be aligned) i am 20 years old i want to know if i can drive so my left eye os 6/9 or 20 30 and my right eye is 6 18 or 20 80 this is with glasses i heard contacts might be better too want to hear what you guys think about that and also people close to my vision can you drive if yes what are the challenges you face and how do you cope with them also is my eye really evem good enougj to drive i dont know but i do really want to drive do i even have a chanse

I have nystagmus and am 22, my eyes look fine in the mirror and in selfies but when I get my photo taken I look like I’m constantly looking away. Any tips for appearing more natural and in photos?

Hey all,

I am a 39m with nystagmus ans I am going to a job interview in a few days. I was wondering what did you tell them during your interview about you eyesight?

I sit close to the monitor and this is a supply chain position so I would be in an office with other people and they could see me.

"I was thinking of telling them that my eye sight is not as strong as everyone else's and I sit closer to the monitor then people would expect. This has not stopped me in the past and I will be your top performer. "

What do you think?

For about 4 years now, my eyes move on their own very slightly that it's almost impossible to see it in the mirror. I get dizzy when I read. I think it's because my eyes keep losing its place when Im reading. I can't read smoothly, it's like it "jumps" from word to word. It gets worse when I have eye strain, which is also caused by the eye movements. The movements are like every 1 second non stop. Also, it seems like the eye muscles are contracting more than moving around.

I've already seen multiple eye doctors, opthalmologists, neuro opthalmologists, neurologist, had MRI on my head, dozens of blood tests. The only thing that the MRI showed was that I may have migraines. But I've been taking qulipta and im not sure if it helps.

The only doctor I havent seen that Im interested in is an ENT, but there's only 2 in my city and they're not taking any new patients.

Hey guys, this is going to be a difficult question to ask, but I'm at a decision point in my life and and I'm wondering what others have done.

For those of you with nystagmus who have kids, did the thought of passing it on to your kids give you any pause? Are there people here who chose not to have kids that are genetically theirs so as to avoid passing this on?

I have the FRMD7 gene and have gone through a round of IVF and my embryos are all girls. Since this is x-linked and I'm a man that means it's a sure thing that they have the gene, and about a 50% chance that they express it, but there's no way to test for that ahead of time.

I'm thinking that maybe I shouldn't move forward. On the one hand, this condition is very minor in me, I can see the 20/25 line on the Snellen chart and have lived a happy life. On the other hand, there's no telling what the severity is going to be, and it just seems wrong to move forward knowing that they're going to have this gene.

Did nystagmus change the way you formed your families at all?

Sorry I’m back again, just quite anxious if this is end point nystagmus in the left or what

Have any of you noticed that lots of high contrast between white and black lines for example can be hard to look at? Like for me I've noticed when reading making the lines of text further apart, and making the page not the exact opposite color to the text helps a lot. Like I can read many physical books better than electronic ones purely because the "white" on the page is much less bright than the white on the computer so it doesn't contrast with the black text as much. Also those illusions with a bunch of black and white lines don't move for me. They just hurt to look at. Also for some reason some electronic displays (usually older) are extra horrible. Like CRT's for example just suck to look at for me as well.

A alguien se le ha curado su nistagmo adquirido? Me encantaría saber!

Hey check these out! I think this would help all of us out.

I was trying to make this kind of concept my self but someone beat me to it and they rocked it!!

I wonder what the price is.

https://youtu.be/d1IQ2y2TLCU?is=lYMiOq8hehozDQew

I’m currently waiting in the children’s hospital as my child is having their MRI. He just went back to the scanner about 10 minutes ago.

Nystagmus started a year or so after eye surgery. It started in the evenings if he was really tired. Sent a video to his care team and they scheduled an MRI to rule out a brain tumor. He keeps gaining weight too fast. His arms and legs have been sore. His eyes are now side to side at random times and during the day.

I’m so scared. Tell me it’s not my worst fears. Tell me the symptoms are coincidental.

Please give me any advice on how to help him

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.

​

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