Nystagmus Professional Perspectives

Professional Perspectives features Consultant Ophthalmologist Jay Self (Southampton), Professor Jonathan Erichsen (Cardiff University) and Dr Rebecca McLean (University of Leicester). Also appearing in the video are Amy Gifford, Megan John, Jordan Sheehy and Nystagmus Network’s John Sanders. It was filmed in Cardiff University’s School of Optometry and Vision Sciences.
The videos were funded by the Nystagmus Network thanks to a generous donation by the Giles Warman Foundation.

[@zaCOBRA100]

Stay strong nystagmus squad! I've had nystagmus since I was born, its hard but I dont let it get in my way.

[@user-mw2ee9cp5e]

Yes bro IT FIRST STARTED WHEN I WAS CLASS 9,NOW CLASS 12.BUT IT WAS MILD AND IT HARDLY HAPPENED.AND I MANAGED TO SCORE 92 PERCENT IN CLASS 10 BOARD.BUT AFTER GOING TO CLASS 11,IT BECAME STRONGER AND I FACED A LOT OF PROBLEMS-ALWAYS PUTS HAND TO COVER MY EYES,MY FRIENDS ARE HURT AND HATE ME,GIRLS THOUGHT ME IN A WRONG SENSE,,,,,,,ETC.I SCORED ONLY 65 PERCENT IN CLASS 11.I WEPT AND WEPT....... BUT I WILL NEVER GIVE UP AND WILL WORK VERY HARD AND I AM AIMING TO SCORE 95 PERCENT IN CLASS 12 AND ALSO TRY MY BEST TO DISCOVER A BEST CURE FOR THIS AFTER I BECOME AN EYE SPECIALIST😎

[@zaCOBRA100]

@@user-mw2ee9cp5e I believe in you bro, you got this

[@tbejvyschannel2715]

I have nistagmus too and I feel better

[@mercurius8725]

Are you guys able to vibrate your eyes? I too have nystagmus, and was able to vibrate my eyes since I was born with no side effects(headaches). It hasn't effected me in anyway. Im 23 now, and I can vibrate them easily having full control. My question is, should this be something I should worry about when it comes to my personal health?

[@meryemtube7277]

Innn

[@jakehilton660]

its really hard with nystagmus :(

[@allenidus3404]

I'd rather be dead it's not fun living with this shit

[@olgahapitan312]

wait really? i have it but i dont get why you think its so hard..?

[@warlordqueekheadtaker7960]

@@allenidus3404 don't say that life is a Gift

[@ciaragarrity6425]

It might be related to R.E.M. Sleep it turns on when im sleepy when i have dreams it goes off after i wake up and when i put dark shirt on my eyes. It relates to the back of your head and the long optic nerves connected to it. The cerrebellum controls nystagmus i think. Nystagmus causes flashes of light so i replicated that and it got worse but darkness makes it stop. i put a shirt on my eyes that is black and then i take it off and my R.E.M. sleep shuts off. You can actually feel it in the back of your head. It might also help epilepsy too but im not sure

[@mrcopywriter]

hey!! I am from India. and I have this defect since my birth but I think that I found its cure through a process in yoga called 'tratak kriya'. I am doing it since 1 month and now I am feeling a continuous steadiness of my eyeballs and improved vision too..

[@frankiecaputo]

Rishi Raj hi I have this aswell and I have been looking for ways to slow them down. how much have they improved? i may look into it

[@heroChicken99]

Rishi Raj hi how is it now after 4 month? and do you have the improvements only during the yoga exercises?

[@mrcopywriter]

***** Only 10 days needed to see the difference.. You may use topmost lid of a pen instead of candlelight.

[@heroChicken99]

Rishi Raj ok. when i look straight ahead my nystagmus is very weak. but when i start looking to the left it is getting stronger. so should i hold the pencil in front of me, or to the left?

[@heroChicken99]

Rishi Raj and how often should i do it per day and how long should last each session?

[@trudianmccray3275]

My son was born with nystagmus but later diagnosed with Septo-optic dysplasia

[@magdalajean-gilles6510]

Did your son have to have surgery?

[@santiagogarcia4549]

I have nystamus, really bad, I wear glasses, I really want to fix it, wonder if I would have to have laser surgery of any kind

[@roshni1811]

There's a doctor in India, Mihir Kothari. Address: 104/105 Kalika Tower, Kolbad Road, Opp. Pratap Cinema, Thane, Maharashtra 400601, India Hours: Closed now Phone: [phone] Research him and perhaps get in touch. He posted on KZbin too. My daughter has it too. Worried me to death until I saw him on KZbin Hope you get better :) x

[@ebruvlogs2514]

Rashi Dom was she cured?

[@ciaragarrity6425]

It might be related to R.E.M. Sleep it turns on when im sleepy when i have dreams it goes off after i wake up and when i put dark shirt on my eyes. It relates to the back of your head and the long optic nerves connected to it. The cerrebellum controls nystagmus i think I copy and paste this comment everywhere so people can try to fix their nystagmus.

[@atianawarren6165]

Santiago Garcia dude me too

[@scottfilmlimited5259]

Dont contact ANY doctors in India. Sub standard practices.

[@celestial3328]

What if it's Voluntary like mine?

[@plutonium916]

mine is both voluntary and involuntary

[@ciaragarrity6425]

I made my nystagmus stop only for little but thats progress. I got several types of it. Even glare nystagmus gets slighty better because that eye is sensitive to light so try wearing a black shirt for at least ten to twenty seconds before you take it off i want to see if people cure it

[@chronicallyantonia5310]

I have congenital nystagmus

[@faisalansari-om1ym]

At last I got Someone like me

[@juliusuotila8963]

i have it aswell

[@raoshahid1478]

What do you fill in congenital nystagmus?

[@educationworld8310]

I have nystagmus with -12 no. But I had icl to remove specs, I have nystagmus by birth

[@lovepreetdhiman7604]

I have also nystagmus by birth

[@brittanyb3618]

Did the icl help slow down the nystagmus?

[@Cece.McMillan]

I HAVE VOLUNTARY NYSTAGMUS HELP

[@leelee9523]

boy

[@asianperson2985]

I can shake my eyes whenever I want to. What’s that called?

[@Dominik-th2po]

I've got the same, it's simply called voluntary nystagmus. But I don't know why we are even able to move our eyes so quickly. I asked my ophthalmologist about it and she said it's very rare that you can do that and that it is just something special like those people who can wiggle with their ears. But more she didn't know.

[@jamiesmith1261]

I can control it I can do it in a circle and side. To side

[@tbejvyschannel2715]

I have the same thing but I don't know

[@wattsy6303]

I really hope this wil be curable soon in the future, the visual and social disadvantages of having this is too much for me sometimes it gets me really depressed and suicidal

[@waterbron3480]

Wattsy hey man. I have nystagmus as well. I’m 14 years old now and I accepted it. Don’t feel depressed about it. Just try to accept it and maybe in the future it can be cured. :) stay strong buddy! (Sorry for my bad English)

[@allenidus3404]

Good luck I fear most of us will live and die and never be cured the odds of nystagmus being cured is about as minimum as curing cancer hell nystagmus is never ever even talked about in everyday media no one gives a shit about uz

[@lovepreetdhiman7604]

Hey I have also nystagmus.i accept it and we have thanks to God bcoz good gives us eye for see the world think about them who have fully blind..be positive

[@ASBK1997KSAH]

i feel like a drew the short end of the stick...i've met another person who is just like me with nystagmus and all but his vision was better. I don't understand, people wore glasses and able to see far whereas when i wore them nothing changes. Why? Went to so many doctors yet non of them was helpful. In my teenage years i didn't really thought much about it, it's not so bad not being able to see well back then. Just sit in front, try to see the blackboard. Got people to pick me up from school and to go around. But upon pursuing my degree in electrical engineering, i couldn't even solder properly. Funny. Why do i even chose this path. Couldn't get a license either. Heck i can't even work as burger flipper just cause i had to run up to the screen to see the goddam order. Yet how could i put myself so low when blind people had it worst. Why do i have to be stuck in between?? I know i'm being selfish but sometimes i just can't help but think why. Sorry, just felt like venting a bit. Have a good day everyone

[@fayazkhan1729]

My prob is not the oscillating of eyes but the awkward compensatory positioning of the head or t null point which i think makes me cut out a very funny posture because I v seen people suddenly burst into suppressed laughter that’s when I lose of confidence n focus on the conversation or the job at hand and curse the day i was born..... it’s really a debilitating ailment

[@rainyangellifestyle]

What is your opinion on CBD oil? Since nystagmus is a neurological condition . CBD oil is a substance that calms the nerves by a lot. I also have nystagmus and am always trying to find new ways to slow my eye movement down or stop the movement all together

[@cris751]

Rainy Melendez just drink a few beers, I do it helps slow down the movement and also gives you a break from headaches if you get them like me

[@ciaragarrity6425]

fixed my nystagmus when i took special glasses from a wendys kids meal and modified it with grey duct tape. Because there was no glare and the lens was thick and small it kept my eyes focused and since the lenses were mostly covered by duct tape except for the circles in the middle it let my eyes rest. When i had no glasses my eyes would keep moving but with the tape my left eye took over. The lenses protected me from some light but could have done better but my eyes became better and when i took then off i could focus and see people again. It used to be so bad i used to think i would have a seizure. But there not waterproof i can show how i made em im putting this all over so people can see it

[@Peterpiper817]

That’s impressive

[@ciaragarrity6425]

@@Peterpiper817 you just got to keep the eyes straight, my last post was 1 year ago, as of now I made a pair out of a cereal box, I kid you not, it somewhat worked, but the one pair I last used was perfect. My tip is know if your near-sighted or far-sighted, the size and shape of your eyes. It also depends on the shape of the nose. If you can pull the trick off, you may not need devices to keep your eyes okay. I'm no doctor, but have studied my own eyes for may years. However let me update on another thing: Nystagmus, should be considered fully natural. It's not a defect or a sickness. It's just the fact that your eyes aren't always supposed to be straight. So please reconsider the risk of implants. Nystagmus is a part of the body. Without it, I believe REM sleep would stop. and most honesty, it would just be a mess. One of the most random things I came across, is a brain and eye stimulation, that stuns the nystagmus: Just this simple: Pull out a notebook, and jot some notes down of a random topic, whatever helps to get the cerebellum working will most likely trigger your eyes to slowly stop. My theory is the body is confused and needs signals to turn the cerebellum off, disabling nystagmus. Any thoughts?

[@Peterpiper817]

Ciara Garrity omg !! Are you a doctor ?!?! This sounds so professional

[@ciaragarrity6425]

@@Peterpiper817 Why, thank you! I mean, I guess you can say that, considering I do have Nystagmus myself, and I do research my own condition. My eye doctor didn't know what to do with my condition, so I got sick of what he had to say. Thus here I am. I am only 20. I'm not even old enough for the job.

[@Peterpiper817]

Ciara Garrity well thank you I’ll try something similar and hopefully SEE some results. Get it, I’ll SEE some results because Nystagmus deals with the eyes..... Sorry I’m cringy😅

[@mastereducation3404]

Can Nystagmus transfer mother to children..

[@jayeedalvi8083]

Sir , can you suggest some Eye Exercise for this , so we can overcome Nystagmus .

[@ravibhushan669]

My 4 years girl baby have nystagmus. I consultanted to doctor but said that there is no treatment of it.

[@sasheen6664]

I have congenital nystagmus and I'm starting to post gaming videos on here it would be amazing if you guys could give it a watch its hard enough for me to concentrate but it's my passion I love it

[@justinreyesv]

i have this , i want to fix it

[@davidgarcia1502]

knittycatkitty Its hard But you learn to deal with it In your life

[@szymonprzyby9705]

I have it as well. I was already in clinic which tries to cure it, but they may only move null point by surgery, if it's not in the center, but not cure disease.

[@preetimishra1098]

Which clinic?

[@ciaragarrity6425]

fixed my nystagmus when i took special glasses from a wendys kids meal and modified it with grey duct tape. Because there was no glare and the lens was thick and small it kept my eyes focused and since the lenses were mostly covered by duct tape except for the circles in the middle it let my eyes rest. When i had no glasses my eyes would keep moving but with the tape my left eye took over. The lenses protected me from some light but could have done better but my eyes became better and when i took then off i could focus and see people again. It used to be so bad i used to think i would have a seizure. But there not waterproof i can show how i made em

[@robroy5573]

You can treat it but you can't fix it. Mine is very mild that come and go anytime.

[@noni-ayannagobern-roach3118]

My son was just diagnosed with this. Can it be treated with prisms?

[@sapindersapinder7107]

Plz tell corritive exercises for mistagnus

[@jakehilton660]

Dr Jay Self Sees me and my nystagmus!

[@hamzabenhzmzaben3138]

من يترجم لي جزاكم الله خيرا

[@rn4341]

No cure yet?

[@allenidus3404]

No shit Sherlock had it since birth

[@lovepreetdhiman7604]

@@allenidus3404 hi I have also nystagmus.i accept it pls don't depressed thanks to God for gives eyes for looking the world thinks about whoes are fully blind

[@allenidus3404]

@@lovepreetdhiman7604 Thanks man the way I look at it though is if there ever is a cure great but I reckon by then I will be an old man & I will hopefully be satisfied with how I lived my life and won't even see it as burden anymore. Sadly I miss when I when I had something wrong with me but I didn't no the name for it if that makes sense? Sometimes not knowing is the best mystery!

[@raoshahid1478]

Hi im from Pakistan my son he can't see in Sun light his eyes are shaking continually,is it nestagmus? He is only 4 years old i m very disappointed about him 😥😥

[@godspeed-kidsgames309]

Hi my child is six years Old. He finds very hard to see in sunlight. His eyes move all the time is it a nestygmus?

[@godspeed-kidsgames309]

And plz can you suggest glasses for him?

[@Snow-gh1sk]

Is nystagmus the fact that you can "shake" your eyes or is it more? I can shake my eyes in that it way but I have control over it and it doesn't effect my life.

[@maddieboo6965]

Snow same

[@littlemisssunshine874]

Snow nystagmus is complete involuntary movement of the eyes 24 hours a day for the rest of your life

[@user-iy4nt2ni6w]

I have control over it to!

[@OwenUtleyTRO]

@@littlemisssunshine874 i think it's voluntary nystagmus where you can control it

[@mercurius8725]

I have voluntary nystagmus, can vibrate my eyes with full control having no side effects. It also doesn't effect my day-to-day life. When I found out i had Voluntary Nystagmus, I realized I wasn't the only one.

[@victorprice6886]

Never let a condition define you