Відео

I have acquired nystagmus and the doctors have no idea how it happened and we've tried everything. Every test comes back mormal except the VNG where you can see the nystagmus. It really sucks ☹️

I have this condition due to ONH. It’s very difficult as a young adult trying to make a footing. This documentary really means a lot For me nystagmus feels like seeing the whole picture but none of the details.

I was born with nystagmus and my biggest struggle with it is the bullying and harassment that I go through for something that I have no control over.

This condition has literally ruined my life pls don’t promote it like it is no problem

I drive and I have nystagmus. I have a perfect driving record.

There is a new therapy called syntonic vision light therapy. If anyone knows more, would appreciate if you could share their experience

Oh my people are always upset they I did not see them.

My child has nystagmus he is 5 now he has had since birth I was wondering if anyone knew if there is any way to cure it? Or if there is a way it dosnt get worse? It is linked to the brain correct? Has anyone with nystagmus tried any cráneo massages?

Yes i have nystagmus too

A escola teria sido muito mais difícil para mim se eu não tivesse bons amigos, que sempte ditavam todo o quadro para que eu copiasse a matéria. Os professores não me davam muito apoio, mas o governo enviava uma prova especial com letras maiores para mim todo ano, era algo que me ajudava. Até hoje tenho muitas dificuldades, como pegar ônibus, enxergar placas, não posso dirigir e nem usar lentes de contato por conta do astigmatismo alto também, mas estou lidando. Afinal, 21 anos convivendo com isso, uma hora você se acostuma. Ainda me frustra muito ver todos os meus amigos e pessoas mais novas que eu dirigindo, isso facilitaria minha vida de forma inacreditável, isso me deixa um pouco triste. Sabemos como no Brasil o transporte público é caótico...

In my case, oscillopsia came from a vestibular bilateral damage originated by gentamicine prescripion. I made this video to try to explain my symptom : ua-cam.com/users/shortsh98a7MAZB1I Being not related to nystagmus maybe this is effectively not related to your point, however. Anyway, I hope you can get more support for your research and find any kind of help for patients having this terribly uncomfortable symptom. 🍀🙏 Saludos desde México. 👋

I ended up with a concussion and cervical sprain and mine do that.

I was diagnosed with downbeat nystagmus a year ago. As a nurse, I had ruled out many problems and knew my eyes were not focusing prior to seeing a Neuro-opthamologist. I am taking Ampyra ER 10 mg every morning. It has made a huge difference. It takes 1-2 hours for it to stop the eye movement and I can resume a somewhat normal routine. I can not track things in the sky nor look around while driving or walking. Many of the things I once did and enjoyed I can no longer do.

I can shake my eyes

My nystagmus never gave me issues. I was born with it, so I was told that my brain pretty much trained itself to compensate. I see everything perfectly still. Only when I'm very tired I see sometimes a little shaking, but mostly lights in the dark.

Seems like it might be rather common for people with albinism.

I get so much motivation by this video thanks for this video❤❤❤❤

Hi Matt, thanks for doing this vid, i wish i could have heard ur words and those of ur friends who speak when i was 16! Well done Mr.... from Al (16 in 1980). By the way I got my driving licence at 21 so it's is possible depending on ur situation everyone is slightly different. I've been a teacher for 30 years now and had many questions from students, so many that i really dont mind any more... I'm sure you get it..

Thank you for this video. I didn't know what it was till my late 20s and I was born with it. I recently tried getting my driving license and I couldn't meet up with the requirement. Made me feel really bad. It is a disadvantage but not a disability! Not being able to drive doesn't make the world a terrible place....

Years & years of slow education to obtain an MA and employers still ask and coworkers still express their feelings and you end up living in poverty most of your life. At 20 a man with a law degree and 2nd degree, said employers didn't trust him enough to hire him, so he was living on a disability pension, which I can now say, it is a big $1300 a month. Disability does equal poverty!!

This sums life up perfectly ❤

I have nystagmus and I can see everything perfectly fine except for when I look to the sides

Thank you. This nails it.

My name is Raymond I have just joined the group, I have had congenital nystagmus since birth, early on in school I discovered that I wasn’t keeping up with the class that was about grade 3 we’re looking back at the 1950s as I’m 70 now even back then they recognize there was something needed to be done so I went to another school. They had a special class, and I am grateful I have a wonderful teacher that worked with me, I managed to get into a relatively good paying job factory. Surprisingly I got my license, I eventually got my license to drive a big truck, tractor trailer, I had to spell yeah I exam through the confessional lenses that you look through, there was an elderly gentleman in the building, and he asked me why I was so sad working and I told him that I had failed the eye exam, but he had taken me in the back And there was the old testing equipment and I passed the test, So the next three years they would check your heart so that kept me driving truck then when it came to the high test again, I have what they call a null point, I could turn my head to the left, and I could see if it would stop the high from moving for a very short time, so by this time, I could hear the young lady typing on the computer and asking what I could see so knowing that she was looking at the computer or the keyboard, I would turn my head up and pull my head away from the machine and I could see I got away with that her a good 10 years I finally caught on and that was the end of driving tractor trailer, so I got into hand lettering as when I was in special class I did a lot of artwork got quite good at it. Good enough to enter the college , the entrance exam consisted of your artwork which was in the hallway, and then a desk with just a pencil and a piece of paper, and you were allowed to use whatever was on top of the desk nothing else, and to draw a square inside of a square inside of a square down to a to a dot, In order to achieve the ability to pass that test, I took the edge of the paper or to the other edges of the paper, and used a paper as a straight line ruler. Then I would take the paper and go to the other side, and from the bottom up to the top and the top to the bottom, so the square was inside of the square, all the way down to the very center, I probably had the Stratus lines in the class so I managed to pass the entrance exam to that college. So driving truck in the city I would drive into the industrial sites and look for companies without signs on their buildings and the companies that I drove for with allow me to use the truck to go back to the building to back into the warehouse door I would put a ladder along side or up against the truck box pull the sign board up that I did the work on bolt the sign to the building and get paid for the work, which I did on the weekends and being an accomplished artist, I could sell my artwork I got close circuit television, and from the Canadian national Institute for the blind, I got what they call an opti vizor the same equipment that a jeweller would use and of course, other very thick magnification of glasses, it’s things like that over the years. You learn how to get by and you’ll be surprised some of the work and jobs you can do my eyes are much worse now and I get severe migraine headaches from my condition, so they have medication and other treatments for my condition, and I went through a lot of teasing, and I got picked on back in my day very severely. I was very fortunate I made some good friends that stood up for me and would protect me thanks to them I felt safe, they kept the bullies away and with the driving license, they took the license for a big truck away and then I surrendered the car license. I had an accident. No one got severely hurt very fortunate, but I made a mental judgement of the activity that led to the accident and realized I had to surrender my license on my own, I was grateful that nobody got hurt but I made that judgement call at that time and in Canada they allow me to take the bus but because of the eye condition nystagmus and tends to make you more determined to make it to. What do you want to do and if you’re just finding you have this condition you’re headed for a wonderful journey that you can call your own and surprisingly it will be a very interesting journey and rewarding so there’s nothing to be afraid of. There’s going to be obstacles and setbacks but you’ll make it in my opinion you’ll do fine as I did I recognize that I could’ve probably had bigger achievements, but I’m grateful for the ones that I made it

I have nystagmus and I can see pretty much perfectly but I have to hold my head at a severe angle sometimes to focus without my eyes jittering. Interestingly, sometimes I can look straight ahead and focus fine but it fluctuates throughout the day and can be dependent on stress, tiredness, or jus random. Good vid!

I know this is an Older video, but this helps me show my family what my husband goes through. This video is exactly how badly my husbands is. He's had 5 Brain surgeries for Chiari Malformation and not even that calmed his eye movement down. Our youngest, just turned 1 today and I found out a few months ago, that he, infact has this as well. I saw this in his eyes one evening and freaked out because I wouldn't wish Chiari on my Enemy. I made a PCP app for him and he's been verified by OT [He's an IUGR baby and had to see OT once] who then put in a memo to his PCP, who also saw him and verified that I was indeed, seeing Nystagmus in his Left eye but it was also in his right eye that was hard to see. He have a Neurologist app in April to check for Chiari Malformation.

Boy, do I resonate with almost all I’ve heard. I can drive, but I restrict myself to main roads, no highways or freeways. I am a teacher. I always tell my students about my eyes so they don’t think something is wrong with me if I bump into things. :)

I wonder if CBD oil would help

I was born with the same eye condition,I drive with no problem I'm just one of the lucky ones

As someone with voluntary nystagmus, I can only imagine how terrible it is for this to just happen.

My eyeballs don’t shake like this but when I focus too hard/focus for too long they’ll shake really quickly for a second. It’s really frustrating. I can also voluntarily shake my eyeballs on command

Thankyou for this education.x

i have never met anybody else with nystagmus i don’t have it too bad i am lucky to be able to box and play rugby well but i have to tilt my head to the side and people always mimick it and i laugh it of but it kills inside my deepest empathy to this suffering with me

Hello i am a nystagmus pashent plz connect me on whatsapp

My mother took me to the Ophthalmologist in 1959 for this when I was 4 years old. He said, in so many words, you’re son is screwed for life. Even now with scans, mri’s, etc, they still don’t know what it is.

Any connection to the Military on this? I have a son and daughter both born with it but don’t know any family issues. I was around nuclear, biological, and chemical equipment in my job.

I was born in the early 60s with severe myopia and nystagmus. Was never really a big deal till I got to the higher levels in the school. Mercilessly bullied to the point of having to fight my way through school, what made it worse was having to constantly change schools, two different elementary schools and three different high schools. Not only was I always the new kid but I was also the strange kid. Did my best to hide my bad vision to the point of probably risking my life at times, thought I was hiding it but had no idea how bad the nystagmus was. people saw me as normal till I noticed my eyes moving constantly, then thought I was shifty or trying to pull something off for dissing them. Didn’t truly realize the impact it had until I got older and was in a work position dealing with the public. Had accusations made about me that I just couldn’t figure out the reason for, at times to the point of almost losing my job. 60 now, almost completely blind, living independently. Harder now to dive back into the dating game with a little vision, and a realization that people are looking at my eyes and trying to figure out what the hell is going on with me. Especially with such critical takes on others in the dating world. Listening to the familiar experiences of others almost brought me to tears here. Struck me deeply to the core. Oh well, like they say, what doesn’t kill you makes you stronger!

Unfortunately i was born with this and people always ask me the annoying question " why dont you get laser" because my eyes shake. A laster wont work. Vision is shakey and blurry. When the eyes shake your world shakes. And people treat me like a freak. So i stay away from people and dont leave home. Unless its to work and thats hard and embarrassingi go to doctors, eye dictors, specialist and they tell me basically oh well live with it. Theres no cure.

Well done Thanks for making this video!! I have a condition called Achromatopsia (very rare) and one of the symptoms is nystagmus. When I was a teenager, I met a beautiful young African American woman at a blind and low vision workshop who had albinism. She could tell that I was uncomfortable with my nystagmus and helped me to cope with it by telling me that I had “dancing eyes”. I’ll always remember her for that and the fact that she was very cute!

This is an eye opening insight for me 😉👀

I could relate so much to the kid especially when he mentioned about no one wants to be friends with the kid who wants to sit at the front of a class. I always thought I was the only one with this condition and it had affected my self esteem in many ways. I was always seen as a weird kid at school and it was extremely difficult to make friends. Thankfully I was able to get my driving license but I really hope there is more awareness of this condition and studies on it's cure.

This? good, super good. Not good with words but this video helps me a lot with writing a character that i headcanon that haves nystagmus. I just really like that character even if i am not good at writing

I have this eye condition nystagmus since I was a kid and still do, from side to side, my head moves to, wish my insurance would pay for laser or surgery on the eyes

Had this condition since Birth (1954).This was in the days when wearing glasses was so uncool. I am happy that it is now being talked about.

I have AN 24/7 due to it being triggered by MS.

I have been a Type 1 diabetic for 42 years with neuropathy. I infrequently experience light headedness but, a few days ago while reclining and watching TV, for the first time experienced a sensation of the scene on the TV repeatedly rotating about 90 degrees outside the frame of the TV which itself appeared normal. I can only assume therefore that only one eye was affected although I am not aware of having nystagmus. This phenomenon lasted about 20 seconds and has not occurred again. My blood sugar was normal at the time. I have significant neck and shoulder stiffness which remains undiagnosed and some evidence of spinal pathology.

Thank you for content❣️

My eyes have been rotating very severely but only for 10-15 minutes every time it happens and I assume it’s permanent because I’ve had it since i can remember