Same thing with me. My whole life has been nothing but self consciousness and anti social behavior. I don't think I've ever been comfortable around people ever in my life. I wear sunglasses in public to hide it from people. Job interviews are the worst.
^ this means I cant get contacts :( well thats what the optitions tell me anyway so yeah its all pretty fucked up to me. Does anyone else have that condition..... & can we hear more on these special glasses please. I cant drive & seeing everyone who I grew up with get their licence at 17 is a real kick in the balls :( I need to see experts but dont know ehere to look. Can someone help PLEASE, I'd be very greatful!!
Reading these comments Im pretty confused cause I got told Im on the borderline (whatever that means) Im unable to read what they want me to read for driving but have driven many times with no problem. Therefor I cant get a licence. I cant remember exactly what my sight is but I also have american football sort of shaped eyes rather than soccer ball shaped
If someone can please send me a private mesage that wouldnt mind talking to me. i have nystagmus and i have never been able to talk tosomeone that knows what it is like. for 21 years of my life ive never been able to talk to someone that knows what its like ive only been able to tell people what its like. If anyone cares to talk to me i would really appreciate it
@EliteSnakes hey my name is rory my whole life ive never been able to talk to someone with nystagmus either email me at wigglyeyess@gmail.com it would be a privilege to meet you
hi all i saw this and just thought ii would have my say i have had cn since i was born and as time has got on it has got worse i had to have a op to remove cataracts in both eyes then laser in my right eye to move the scaring i am now 29 years old and have just been told my sight is 6/60 and 1/60 and there is nothing else they can do for me i have very poor sight and its bluring more and more i have tried the the pills they can think of to slow down my eye but nothing what can i do
Can you really drive with these special glasses? My husband who've I've been married to for 18 years cannot drive due to his nystagmus. I am so tired of being the only driver!
the glasses helped your astigmatism not your nystagmus!! If you have a null point it will help dampen the nystagmus..there is also surgeries that can help but not eliminate nystagmus. You would need to see an ophthalmologist though NOT an O.D!!!
To gpro99, darkland22 and ManekiSE: My 10 year old was also born with Nystagmus. I always thought this condition occurred during birth because of the same conditions you describe, but doctors will never accept this responsibility. NO ONE in my family or my wife's has had it or even heard about it. With technology now days doctors SHOULD know if a baby's head or neck is wrapped around the cord or could be wrapped during birth and should perform a C section or something else.
Hi there, it's a little uncomfortable but a great gift overall. You'll see...
I have 4/10 and I drive using the relaxation point (far right) to see better. At night it is difficult because the lights from the opposite side are blinding and you can't go as fast as you would like. I have a 250hp car and I'm racing in tracks some times, never had problems. Getting laid was more difficult than driving, for me...
Learn to love it and make fun of it. It will never leave you alone. :-)
I was diagnosed as a wee lad and had the muscle surgery after I was out of Kindergarten.
Another thing that helped was getting contacts when I was in middle school. I was told that with CN you eyes are always moving in and out of the focus of the lens of the glasses and with contacts my eyes would always have the focus.
I'm at 20/60, which JUST the legal limit to drive. Every time I go to the DMV I can't read their machine so I have to get the doc to sign a form.
Glassess would make words a tiny bit bigger but they would still be blurry. I wouldn't be able to tell an O from a C. etc.....
I'm 17 and my mom took me to Joel McGahen OD, and he new what my problem was when no one else had ever told me anything! I was told I could never drive because my vision without glassess is 20 / 200
With these special glassess he is ordering for me, I can see 20 / 30.
@bluewatermonster I'm interested about these "special glasses". Do you know what about them gives you such a drastic improvement in vision? With my glasses I still only have 40/60.
@gpro99 Not quite sure about what they are or how they work. He sort of just chose lenses from his case and asked me if this was better or if this was better and we finally found some which made my eyes go from 20 / 200 to 20 / 70.
I told him that binoculars might help me. Because normal glassess wouldn't do much except make the blurred words a bit bigger. - So I'm getting 2 pairs made. One to make my eyes 20 ./ 70 and one with small binoculars in the lenses to make them 20 / 30.
I have had this condition since birth. When I was 18 yrs old, an opthamalogist told me that there wasn't much that could be done surgically ...but he did think that the SOFT CONTACTS that had just came out ( in 1971-72) might help me. He felt that the soft contacts would "stop" some of the movement, not to mention it would also stop the need to have the lens changed in my glasses every 6 months. So, I went for a the contact fitting,and have worn them since. I have had ONLY 2 lens changes since.
I used to have a teacher who had a very bad nystagmus. I always wondered if he could see normally with his eyes moving like that, but never got the nerve to ask him.........I also always used to wonder what the condition was called, and found it out accidentally while looking for a totally different information.......
Hi. I just wanted to thank you for taking the time to make and upload this video. I needed to know what nystagmus looked like, and now, I'm going to remember it for my exam. Thank you so much for helping me learn! <3 :)
if you try purposely blinking does it help the strain because i've noticed that ppl with nystagmus seem to have lost the ability of the muscles to blink effectively. as if staring. try blinking continually while reading to see if improves.. might build back up the blinking muscles. just like a bicep needs to purposely lift weight to get strong the eyelid has to blink to maintain its strength.. after you stop repetitiously blinking, you'll notice a relaxed tendency to blink more often.worth a try
I have started having blurred vision too man, mine is much worse than yours, i can't even look into my left Eye in mirror.. I cant talk straight into people eyes.. man CN is the worst thing that even happened to me :(
I guess I assume that the muscles weakened and that's why the movement isn't as strong, but I don't really know. I do drive now and have no problems driving, except that I can't parallel park. I was nervous at first, to drive, but once it became comfortable it has never been an issue.
I am 33 and I know there is a social impact, but I try to realize that everybody has something, whether we can see it or not, and I don't feel so bad about it. I have worked with the blind and people with much more severe disabilities and it makes me feel kind of silly to even worry that much about it. I work with kids and they notice it and call it wiggly jiggly eye syndrome. So that's what I call it now too! ;-)
I also have CN and was diagnosed as being totally blind as a baby. Over time my vision has actually improved. I theorize that it is because the muscles have eventually weakened, but I don't know. I was told by my DMV that I couldn't get a license, but I found that I could get a daytime license if the eye doctor signed off. I find that I see worse when I am nervous, so I really tried to relax at the eeye DR office and passed their test.
I drove only in the day time for 10 years and my vision has improved enought to drive at night. I always felt that I could actually see better at night, and recently found out that CN is less dramatic in the dark, so that explains that.
My biggest problem with it has always been that I don't have depth perception, so I tend to trip and fall alot, if I am not careful. More so when I was younger. I have sprained both ankles more times than I can count.
@SunyDay76 Did you mean that the muscles eventually strengthened?? When tired or nervous my CN is at its worst. When completely relaxed it almost unnoticeable to me. I could get a license but still wouldn't drive anyways.. Do you drive now?
I have congenital nystagmus and was obviously born with it, hence the "congenital" aspect. I was wondering if you receive any type of academic grants, gov't assistance, etc. for this type of disability. I find it hard/expensive to get my prescription renewed as often as I'd like on my lenses.
I currently do not receive any kind of grants for my eye condition. Only grant I could find for Nystagmus was to pay for technological aided equipment like Textbooks with large text, magnify glass, etc. There might be some stuff out there for just poor vision. I have 40/60 corrected.. not sure if that can get me anything. I really haven't put enough effort into searching though.
I try not not to update my lenses too often because it weakens the eye further, not having to work as hard..
Wow, I always thought I was weird but reading these comments I feel quite normal... (though it is never sure what in fact is "weird" and what is "normal" :-)) I have the same problems as described here. Recently I got my drivers license and while doing the course I often felt like an idiot because I just didn't see the road and all the things around well... I got pretty frustrated because of it... Thnx a lot for help, feel fine now. :-)
I sometimes ask people what they can see versus me at an equidistant length to some writing or an object, and I am always amazed at others' sight!
The overarching question that I have never found an answer to is whether or not to address my nystagmus with newly met people. Do I say something or let them stare in confusion? Neither seem to work the way I want it to...
Oh well, at least we have unique eyes. The world we see cannot be seen by others.
@eldanloco "Oh well, at least we have unique eyes. The world we see cannot be seen by others." My daughter is twelve and was born with nystagmus. This quote is so beautiful it brought tears to my eyes. I always told her she was special because her eyes danced and no one else's did. She knows she is unique and when she read a comment beneath this one about hoping some day there is a surgery to cure it she said she would never do that even if it were available. Dance on... :o)
I sit infront, but the numbers in math is still too small. I usaully get a photocopy, but i learn from visual. I didn't like using magnifiers cause it felt weird
Same. My glasses make the print smaller. I tried glasses that made print bigger, but it gave me a headache after reading several minutes. Now i am in college, and i also don't have a driver license. It's a hassle riding the bus or getting someone to drive me.
School is tough, for sure. Sit in front every time. I did sports in middle school and high school, CN made it more difficult. Today, still hard. No drivers license, I don't drive at all.
i hate my eyes to they move all the time, and i never know when they are or anent moving.I also hate what other people say when they notice that my eyes move. im 16 so i kinda know how to deal with it but not always if any 1 has any advice please share it....
I have it,too.LOL, Same thing, tilted head most of the time!!It gets worse when I want to stop it at an interview or talking with someone especial!!I hate it when that happens!!But mostly, it happens when ppl are more than 2feet away from me! Anybody knows if the movement slows down with age or not?I'm 25 and I don't really know myself if they move slower than before or not!!
Same here man. During interviews I am very self conscious. Have you been told that your head shakes back and forth? I think mine does this to try to correct the shaking of they eyes by following them..
I don't think my head shakes, maybe slightly and sometimes, but no one has told me that!but definitely I tilt my head to the right!I've been told that!
I hate it....... My eyes move all the time, and i dont notice it, i even look in the mirrior and dont notice it, i wouldnt beleive i had it, if it werent for people asking me every 2 seconds...i hate it so much, i dont even want to talk to proplr, its awful and i cant stand it...how old are you btw?
You're lucky that you dont notice it. Mine is pretty bad. Its horrible in the morning. I don't think it is possible to see the movement in a mirror, Ive never been able to. I'm 19, btw.
oh im only 13, so i guess youve had some more expeirence living with it! I feel so weird talking to people like i dont want to look at them! Is it the same for you?
did this start out intermittently? or were they always constantly moving? i dont have money to go to the doctor, but my eyes started doing what yours do a year ago but its not all the time, and for not very long. it will happen a few to several times a day depending on my activities and when they move side to side its only for a second, but ive learned to just ignore it , do you have any advice to offer from what you know
I have pretty severe nystagmus, my eyes rotate in a circle VERY rapidly if I try to look at something straight on like a normal person. I thought of a good example to emulate kind of what it's like for me. Take a laser pointer, and hold it still. Then start rapidly spinning it in a circle as fast as you can, that's what the still dot would look like to me. If I try to hold my eyes still in a normal position they literally rotate so fast that the dot almost looks like
my son has this as well he also has strabismus he had surgery when he was 6 months old. this past year or two his eyes got worse he gets alot of headaches. so i contacted this dr. burnstine the first doctor to do this surgery ever. and he examined my son. the surgery was not done correctly so he has to have it again. akron ohio is only 2 hrs from us so he's the man we want. My son is 10 now.
I had surgery when I was 15 to shorten eye muscles so I don't have to tilt my head as far to the left (to see out stronger right side) It helped a little in vision but I had an influx of pestering for wearing sunglasses and having blood-red eyes for a couple weeks. For those still in the middle of adolestents or early years, it gets better. I go weeks without even thinking about CN. Buit when I meet new people, I have to go thru the routine of explaining myself.
Glad to hear that it gets better! That is what I have been wondering. I just had a recent appointment with my eye doctor and my vision has increased within the last year from 40/60 to 30/60. From 18 years of age to 19. Only thing that worries me is if I will ever feel comfortable enough to drive one day..
I've suffered from CN for nearly 29 years. gpro99, thanks for posting this and starting a dicussion on the subject. Reading these comments were a mixture of laughter and sadness. Its nice to remember I'm not alone. But I too was tormented as a youth for my "googely eyes". But as I grew older, the osolations slowed and I became more confortable with myself. I am still very self consciece about my head bobble though. I'm sick of people asking me "whyat are you saying no about?"
you know, I'd never seen nystagmus before. I have it alot better than most: I'm able to drive with glasses, and as of my last eye test I think my vision is 20/45. I don't ever get attacks, and my vision is only slightly impaired in my right eye. I got a time of it in grade school, and now I see why. I filmed myself, and it's extremely noticeable and 'weird'. Now I understand why kids made fun of me and why people look at me weird, especially because no one has heard of it before.
though, I'm on my way to being a professional concept artist and I doubt I'll ever get surgery. Even if my eyes get worse, I'm much more afraid of having a knife near them, because being that one in a bunch of millions isn't a chance I'm gonna take... My condolences go out to everyone who has truly suffered at the hands of CN. Hopefully you will all be able to overcome it and follow your ambitions.
Wow! Listening to all the comments regarding how nystagmus has negatively effected your life makes my heart break. My son is 3 months old and he has been diagnosed with nystagmus. Grayson, I am so grateful for your video and your ability to help people feel like they are not alone. Your honesty on the subject is refreshing and it's great to hear young peoples perspective.
man i can;t shave left side of my face ,& it takes me nearly 10-15mins b4 i can drive(day only) to stabilize my eyes ,and i can't look directly 2wards ppl ,i have to tild my head like maniac ....
I believe it has to do with the muscles that control the eye; they must be weak looking that direction, increasing the shakiness causing us not to be able to see our left side.
It's so nice to know there are others out there! I always felt so alone honestly and something I never talked about because it's the one thing that I hate so much about myself. It seems that we are all miserable about it.
Hey guys! Let me join the club here! I've got CN too! Oh the fun and thrils of it! When I was a kid I was totally made fun of! Totally traumatized me...... I feel like it's ruined my life honestly......
Usually can't focus on distant objects, vision is always shaky; unless in the right scenario were the distance and angle are right. It's almost as if I am constantly drunk, as far as vision is concerned. :)
That really sucks..... You know if I were at the right position aka job I could design you guys adaptive glasses... bscly a sensor and dual lens glasses with a small lens that tilts images to stabilize movements so it could be easier to read stuff...
nothing complex really but probably usefull for the few that suffer from congenital nystygmus / didn't fix theirs yet.
After making some long distance trips to meet with some neuro-opthamologists, I came to find that anxiety levels and eye movement were often linked in congenital nystagmus. I was prescribed an anti-anxiety medication known as Klonopin. I have always said that I would never take 'psychiatric meds' but these pills have truly helped me. My nystagmus is still present, but it is always at the same level, despite my stress. My driving has improved as well... I am just overall much more confident.
I have a positive update about my Nystagmus position. Hopefully this will help some of you:
At the beginning of the year I had completely had it with my inability to see. It felt like it was controlling my life and I wanted it corrected. You'll see I made a comment on this video long ago, and I feel even better after reading all of these posts. All of the descriptions are flawless in describing the terrible effects, especially those describing the dizziness, dissociation, confusion, and anxiety.
Thank you for posting this. I was thinking recently of making a video to raise people's awareness about nystagmus and astigmatism, but as usual I felt afraid and self-conscious. So I searched and found this. Reading the comments here, although it has re-awakened painful memories, has made me feel much less alone.
Interviews and trying to approach new people are hard, and I am sad about not being able to act in films...does anyone know of a film which featured someone with nystagmus?
does anyone know if contacts fix Nystagmus? I am 18 and i have gone through school without glasses or anything its hard sometimes but i just move up when i have to. The main reason i want contacts is for better vision when driving so i dont die but i dont know if contacts help
I also have congenital Nystagmus. I had corrective surgery done when I was 4 by Dr. Saunders at MUSC in Charleston, SC. My eyes still move horiztonal but its very slight, and usually only when I'm tired. I have 20/70 vision, 20/35 with glasses.
that is very characteristic of congenital nystagmus, in fact the only way u can see your eyes moving is on a video recording. Most people with this kind of nystahmus dont believe they have until they see a recording
you know u gotta wonder if we cant see our eyes move in the mirror..then maybe their is a way to train our eyes to stop doing this...if they stoped their then maybe their is another way to treat this ( i have nystagmus as well)
Hi i have your same problem. I am curious about the fact that i don´t notice it when i look at my eyes in front of a mirror. Do this happens to any of you? thanks
with other people is the same, when i look in the mirror and try to follow my eyes, it is impossible because we follow our own pupil, it is like we are watching our eye. when we move our eye, it moves in the mirror too, so we don't see the difference.
That comment was intended for karmilovich by the way. One time I was going to the movies with a friend and we got pulled over for speeding. The cops frisked us down because they noticed my nystagmus. When people are drunk they have nystagmus so the cops checked my eyes. They frisked us and searched the truck for an hour and caused me to miss my movie. Has anyone else had a simiar situation? lulz
That's good to know. A lot of what I've read, people with Nystagmus can't drive so I'm glad to read that many do. My son is only 4 so we've got many years to go. The doctor says he has poor vision and his glasses won't correct his astigmatism but they will improve it (20/300 far.) but yet he's been reading since age 3 & is reading even better now that he's four (of course the print is larger in what he reads) I've began talking to him about his Nystag.& trying to prepare him 4 any teasing.
Ahh, I fucking hate Nystagmus. I have it too. It bothers me that there isn't really a cure for it and I think most people would view it as a cosmetic thing anyway, but they don't know the emotional problems that come with it, which I believe are worse than the physical ones.
I have Congenital Nystagmus and after acupuncture, vision went from 20/50 to 20/30, movement went from 11mm to 3mm not noticeable. Also NeuroFeedback works well but it takes 20 or so sessions and is expensive (I have spoken to a few NF docs that has eliminated their patients Nystagmus using NF. I tried the surgery when I was 21 and it didnt do anything apart from probably cause a load of scar tissue! Message me if you want any info on these 2 treatments. Sharon (UK native now in Canada).
I have it as well ;/ I don't need to wear glasses and I do everything to hide it. It makes things more difficult with everything as girls,work, meeting new people etc. :( It's horrible;/
My 4 yr. old son was born with nystagmus and his sense of hearing and memory are SO good. He started reading at age 3 and I somehow attribute his "smartness" to his nystagmus. SInce he's only 4 he can't really describe what he sees. SInce you are older, I was hoping you could give me some insight as to what someone with nystagmus sees. I was surprised he could read since his doctor said he has poor vision and a stigmatism. He compensates well. Can people w/ nystagmus drive?
Hello karmilovich, you have some excellent questions. I also have superior hearing that I believe is due to my vision/nystagmus. When I was growing up reading was very frustrating for me; I would get headaches after long periods of time. Looking at things to my left (without turning my head) shake like crazy. Things straight ahead still appear to be wiggling. Looking at things slightly to the right is the only way I am able focus. I could drive but I hate driving, b/c of the nystagmus.
I can describe what your son is seeing. When you spin in circles and get dizzy, your eyes shake the same way. If you turn your head a certain way, you'll see better. I have nystagmus and i drive but it's difficult to drive at night and in unfamiliar places. College and job interviews are tremendously difficult. Also, my parents were cruel to me. I started making C's in college because i didn't want to do class presentations and they didn't understand Nystagmus causes major anxiety sometimes.
My son has this condition. He is 19 months old right now. He has begun to tilt his head in order to stop the shaking and see straight. What are your thoughts on surgery to help with the nystagmus??
My parents also noticed me tilting my head to compensate early on too. I don't know enough about the surgery's in order to comment on them. I would say go for it, it's worth a shot.
I thought glasses couldn't help Nystagmus. Looks like your prescription is around -6 or so. I disagree with your assessment : your eyesight will NOT get worse with age, any more than with other people with normal eyesight. If you're now 18 or 19, you're pretty well done with deteriorating eyesight. Just protect whatever sight you have and you'll be all right. Take care.
i just happened to be youtubeing and i came accross this which had nothing to do with what i had originally searched. i was watching daath, and somehow related videos took me here... lol
but thanks for the answer. onemore question though.
do you know what number they are? like a -5.00 or -6.00 etc?
Yeah its hard i wish there was a way to hide it i mean going through being young and getting cold crazy eyes ect....its hard and i just want to Fuck up everyone who says something about it. I hope there is a way to soon hide it without surgery.
My astigmatism is as bad or even worse than yours is. I know what its like. I can't even look people in the face. People used to make fun of my eyes a lot when I was young.
I have congenital nystagmus caused by ocular albinism. I've been wearing rigid gas permeable (hard) contact lenses and they seem to improve the shaking. Without my glasses/contacts, my vision is 20/200, so I need a strong prescription. I also have amblyopia and astigmatism.
I saw someone with nystagmus on tv and i spent an hour trying to find out what it was called, i've read about it on a few websites and they all say it makes it hard to see and some are blind but it dosen't say what things look like to people with nystagmus. And to the people who were teased, personally i like it and some people will just always be jerks.
I was born with brusing to the side of my head and thats what every1 seems to think caused my nystag.99% of the time im not ashamed of having nystag ill hold my head on what ever angle i want and ill blink as much as i like to keep my eyes steady.Ive NEVER wanted glasses or contacts and i pasted my drivers licence with some sneekyness.i beleive if i didnt have nystagmus i wouldnt be who i am 2day i'd be a totally different person and i wouldnt want that.So live it there so much out there
hi i have nystag as well and am having driving lessons with no problems but am dreading reading the number plate before the practical how did you get through it
I'm 31 and have nystagmus as well. Fortunately, it's mostly controllable. It is only a problem when looking left or right, when I'm really tired or when trying to read those scrolling marquee-type signs. (alcohol/caffeine affect it too but I don't use them anymore)
I think it's harder when you're young, because other younger people will be put off by it. I found as I've gotten older, other people aren't really concerned about it. They may ask, but then we move on. No teasing or anything.
This is a nice post. I'm glad to see I'm not the only one that has. I'm a 29yr old female who has had it since birth. Luckily I can look at things without stuff moving b/c my brain has compensated but geez kids were so mean to me in school as a child. I have had social issues also. I've been told I'm very attractive but with my eyes jumping around I dont feel that way. Its so hard to look people in the eye. Please let me know if any of you have found out how to deal with this.
I have always been self conscious about my eyes. Sometimes while talking to someone I can see that confused look in their face right before they are about to ask me why my are going crazy, I tell them that I have nystagmus and my eyes shake back and forth, and the conversation carries on. I wanted to ask you how your brain was able to compensate and at what age did you notice the shaking decrease? I am 18 now and it has been pretty much constant, no changes at all. Thanks!
Well as I understand it I was born with it and somehow my brain adjusted. My eyes can jump around but yet I can look look at something and it be still and focused. I guess I'm gonna have to be more assertive with people about it. Have you found it true that since you have a vision problem do you try to compensate in other areas? I do. I'm a college student and I make it a point to keep a 4.0 so despite all the bad the vision problem has made me stronger.
hey man i have the same condition since birth, im 16 but i was wondering have you ever tried focousing into a mirror and they stoped moving? because my eyes move all the time but i can make them stop if i focous into a mirror into my own eyes
Hey bro, thanks for the comment. I can't control my nystagmus but I can slow it down by slightly tilting my head to the side, that puts everything into focus. If my head is straight up and down I can't control the shaking at all, it becomes very rapid. Later
I was born with Nystagmus, I'm now 27 years old it was very hard for me as a child growing up with it. I was always called typewritter eyes and I was afraid to look people in the face. I thought I was the only one who had it in my family. I have a cusion who had it but she got it corrected at a younger age. I now wear contacts it's much better than glasses cause when my eyes move the contact lens follow the eye. Question is this a trait that can be past down to your children>
I was told that I am unable to wear contacts because my eyes would shake them right out, lol. And that they would be so thick my vision is so poor that they would be too uncomfortable to wear.
My Nystagmus wasn't passed down to me, it was caused at birth. The story goes that I suffocated for a brief moment during birth and that damaged a part of the brain that has to do with controlling eyes. Something to that effect.
I too was born with it. I think that my parents stated that the Emboli cord was wrapped around my head when I was born. Doctors said that I would grow out of it but I never did. I hope to 1 day get over being ashamed of it.
To gpro99, darkland22 and ManekiSE: My 10 year old was also born with Nystagmus. I always thought this condition occurred during birth because of the same conditions you describe, but doctors will never accept this responsibility. NO ONE in my family or my wife's has had it or even heard about it. With technology now days doctors SHOULD know if a baby's head or neck is wrapped around the cord or could be wrapped during birth and should perform a C section or something else.
I'm not legally blind. I could drive, I passed the eye test for the drivers license, just barely; but I don't feel confident enough in my seeing abilities to want to drive.
I am in the exact same position! I just never want to drive because I cannot hold a concentration to the center of the road. I'm okay in familiar areas, but it would be impossible to drive somewhere new. Nystagmus sucks.
i have astigmatism...but im not sure if mine is the same as yours...my head shakes all the time along with my eyes, but when i was young i had an eye surgery to fix one of my eyes, the one that was worked on got infected so they both had to be worked on...i had the eye bandages on for about a month, now all i have is a lazy eye, but my head shakes and my eyes go side to side....seriously i jus want to know if other people have the same problem..thanks
Sometimes while watching a movie or at a basketball game, someone will bring it to my attention that my head is shaking back and forth, like a bobble-head. So to answer your quesstion, yes, my head wobbles side to side when I am focused in on something, and my eyes are always shaking back and forth. Did your surgery help? Thanks.
I can do that but it doesnt affect me in any way
yepezboy 1 month ago
Well let me join this little group.lol
Same thing with me. My whole life has been nothing but self consciousness and anti social behavior. I don't think I've ever been comfortable around people ever in my life. I wear sunglasses in public to hide it from people. Job interviews are the worst.
RynMyers 3 months ago
^ this means I cant get contacts :( well thats what the optitions tell me anyway so yeah its all pretty fucked up to me. Does anyone else have that condition..... & can we hear more on these special glasses please. I cant drive & seeing everyone who I grew up with get their licence at 17 is a real kick in the balls :( I need to see experts but dont know ehere to look. Can someone help PLEASE, I'd be very greatful!!
nealey2k7 6 months ago
Reading these comments Im pretty confused cause I got told Im on the borderline (whatever that means) Im unable to read what they want me to read for driving but have driven many times with no problem. Therefor I cant get a licence. I cant remember exactly what my sight is but I also have american football sort of shaped eyes rather than soccer ball shaped
nealey2k7 6 months ago
If someone can please send me a private mesage that wouldnt mind talking to me. i have nystagmus and i have never been able to talk tosomeone that knows what it is like. for 21 years of my life ive never been able to talk to someone that knows what its like ive only been able to tell people what its like. If anyone cares to talk to me i would really appreciate it
EliteSnakes 6 months ago 2
@EliteSnakes hey my name is rory my whole life ive never been able to talk to someone with nystagmus either email me at wigglyeyess@gmail.com it would be a privilege to meet you
wigglyeyess 2 months ago
hi all i saw this and just thought ii would have my say i have had cn since i was born and as time has got on it has got worse i had to have a op to remove cataracts in both eyes then laser in my right eye to move the scaring i am now 29 years old and have just been told my sight is 6/60 and 1/60 and there is nothing else they can do for me i have very poor sight and its bluring more and more i have tried the the pills they can think of to slow down my eye but nothing what can i do
bbwcutiekelly69 8 months ago
Can you really drive with these special glasses? My husband who've I've been married to for 18 years cannot drive due to his nystagmus. I am so tired of being the only driver!
LadyReginaSmiles 10 months ago
the glasses helped your astigmatism not your nystagmus!! If you have a null point it will help dampen the nystagmus..there is also surgeries that can help but not eliminate nystagmus. You would need to see an ophthalmologist though NOT an O.D!!!
josh3795 11 months ago
To gpro99, darkland22 and ManekiSE: My 10 year old was also born with Nystagmus. I always thought this condition occurred during birth because of the same conditions you describe, but doctors will never accept this responsibility. NO ONE in my family or my wife's has had it or even heard about it. With technology now days doctors SHOULD know if a baby's head or neck is wrapped around the cord or could be wrapped during birth and should perform a C section or something else.
jn151515 11 months ago
Hi there, it's a little uncomfortable but a great gift overall. You'll see...
I have 4/10 and I drive using the relaxation point (far right) to see better. At night it is difficult because the lights from the opposite side are blinding and you can't go as fast as you would like. I have a 250hp car and I'm racing in tracks some times, never had problems. Getting laid was more difficult than driving, for me...
Learn to love it and make fun of it. It will never leave you alone. :-)
CostaExtranjero 1 year ago
Fellow sufferer of CN here.
I was diagnosed as a wee lad and had the muscle surgery after I was out of Kindergarten.
Another thing that helped was getting contacts when I was in middle school. I was told that with CN you eyes are always moving in and out of the focus of the lens of the glasses and with contacts my eyes would always have the focus.
I'm at 20/60, which JUST the legal limit to drive. Every time I go to the DMV I can't read their machine so I have to get the doc to sign a form.
gc391 1 year ago
Be strong...Be strong man!
unethicalpunk 1 year ago
I have Nystagmus and Astigmatism
Glassess would make words a tiny bit bigger but they would still be blurry. I wouldn't be able to tell an O from a C. etc.....
I'm 17 and my mom took me to Joel McGahen OD, and he new what my problem was when no one else had ever told me anything! I was told I could never drive because my vision without glassess is 20 / 200
With these special glassess he is ordering for me, I can see 20 / 30.
I;ll be able to drive!
He's just a local guy who helped me :)
bluewatermonster 1 year ago
@bluewatermonster I'm interested about these "special glasses". Do you know what about them gives you such a drastic improvement in vision? With my glasses I still only have 40/60.
gpro99 1 year ago
@gpro99 Not quite sure about what they are or how they work. He sort of just chose lenses from his case and asked me if this was better or if this was better and we finally found some which made my eyes go from 20 / 200 to 20 / 70.
I told him that binoculars might help me. Because normal glassess wouldn't do much except make the blurred words a bit bigger. - So I'm getting 2 pairs made. One to make my eyes 20 ./ 70 and one with small binoculars in the lenses to make them 20 / 30.
bluewatermonster 1 year ago
@gpro99 hi did you have any joy with the glasses
gingerlilly1 1 year ago
I have had this condition since birth. When I was 18 yrs old, an opthamalogist told me that there wasn't much that could be done surgically ...but he did think that the SOFT CONTACTS that had just came out ( in 1971-72) might help me. He felt that the soft contacts would "stop" some of the movement, not to mention it would also stop the need to have the lens changed in my glasses every 6 months. So, I went for a the contact fitting,and have worn them since. I have had ONLY 2 lens changes since.
redcaboose3054 8 months ago
I used to have a teacher who had a very bad nystagmus. I always wondered if he could see normally with his eyes moving like that, but never got the nerve to ask him.........I also always used to wonder what the condition was called, and found it out accidentally while looking for a totally different information.......
TemiZee 1 year ago
Wow!
Amazing video
But i have Nystagmus too))
Sweden2Princess 1 year ago
My eyes do the same thing. I also have astigmatism and a lazy eye. I am 20.200 Thanks for the vid :)
Munro27v 1 year ago
Hi. I just wanted to thank you for taking the time to make and upload this video. I needed to know what nystagmus looked like, and now, I'm going to remember it for my exam. Thank you so much for helping me learn! <3 :)
kianatehrani 1 year ago
if you try purposely blinking does it help the strain because i've noticed that ppl with nystagmus seem to have lost the ability of the muscles to blink effectively. as if staring. try blinking continually while reading to see if improves.. might build back up the blinking muscles. just like a bicep needs to purposely lift weight to get strong the eyelid has to blink to maintain its strength.. after you stop repetitiously blinking, you'll notice a relaxed tendency to blink more often.worth a try
2237lemon 1 year ago
I have started having blurred vision too man, mine is much worse than yours, i can't even look into my left Eye in mirror.. I cant talk straight into people eyes.. man CN is the worst thing that even happened to me :(
amarbir22 1 year ago
I have nystagmus too... you're not alone!
freedfirefly 1 year ago
I guess I assume that the muscles weakened and that's why the movement isn't as strong, but I don't really know. I do drive now and have no problems driving, except that I can't parallel park. I was nervous at first, to drive, but once it became comfortable it has never been an issue.
SunyDay76 1 year ago
I am 33 and I know there is a social impact, but I try to realize that everybody has something, whether we can see it or not, and I don't feel so bad about it. I have worked with the blind and people with much more severe disabilities and it makes me feel kind of silly to even worry that much about it. I work with kids and they notice it and call it wiggly jiggly eye syndrome. So that's what I call it now too! ;-)
SunyDay76 1 year ago
I also have CN and was diagnosed as being totally blind as a baby. Over time my vision has actually improved. I theorize that it is because the muscles have eventually weakened, but I don't know. I was told by my DMV that I couldn't get a license, but I found that I could get a daytime license if the eye doctor signed off. I find that I see worse when I am nervous, so I really tried to relax at the eeye DR office and passed their test.
SunyDay76 1 year ago
I drove only in the day time for 10 years and my vision has improved enought to drive at night. I always felt that I could actually see better at night, and recently found out that CN is less dramatic in the dark, so that explains that.
SunyDay76 1 year ago
My biggest problem with it has always been that I don't have depth perception, so I tend to trip and fall alot, if I am not careful. More so when I was younger. I have sprained both ankles more times than I can count.
SunyDay76 1 year ago
@SunyDay76 Did you mean that the muscles eventually strengthened?? When tired or nervous my CN is at its worst. When completely relaxed it almost unnoticeable to me. I could get a license but still wouldn't drive anyways.. Do you drive now?
gpro99 1 year ago
I have congenital nystagmus and was obviously born with it, hence the "congenital" aspect. I was wondering if you receive any type of academic grants, gov't assistance, etc. for this type of disability. I find it hard/expensive to get my prescription renewed as often as I'd like on my lenses.
Thanks!! JM
PS - I added you on here, add me back!
jmwii1981 2 years ago
Hey JM,
I currently do not receive any kind of grants for my eye condition. Only grant I could find for Nystagmus was to pay for technological aided equipment like Textbooks with large text, magnify glass, etc. There might be some stuff out there for just poor vision. I have 40/60 corrected.. not sure if that can get me anything. I really haven't put enough effort into searching though.
I try not not to update my lenses too often because it weakens the eye further, not having to work as hard..
gpro99 2 years ago
Wow, I always thought I was weird but reading these comments I feel quite normal... (though it is never sure what in fact is "weird" and what is "normal" :-)) I have the same problems as described here. Recently I got my drivers license and while doing the course I often felt like an idiot because I just didn't see the road and all the things around well... I got pretty frustrated because of it... Thnx a lot for help, feel fine now. :-)
olgomutik 2 years ago
I like your glasses :-)
nmsll 2 years ago
I sometimes ask people what they can see versus me at an equidistant length to some writing or an object, and I am always amazed at others' sight!
The overarching question that I have never found an answer to is whether or not to address my nystagmus with newly met people. Do I say something or let them stare in confusion? Neither seem to work the way I want it to...
Oh well, at least we have unique eyes. The world we see cannot be seen by others.
eldanloco 2 years ago
But the world others see we cannot..
Great comments, thanks.
gpro99 2 years ago
@eldanloco "Oh well, at least we have unique eyes. The world we see cannot be seen by others." My daughter is twelve and was born with nystagmus. This quote is so beautiful it brought tears to my eyes. I always told her she was special because her eyes danced and no one else's did. She knows she is unique and when she read a comment beneath this one about hoping some day there is a surgery to cure it she said she would never do that even if it were available. Dance on... :o)
Lovehopeandfaithful 5 months ago
I sit infront, but the numbers in math is still too small. I usaully get a photocopy, but i learn from visual. I didn't like using magnifiers cause it felt weird
wassabimuffin 2 years ago
Math is brutal. I used to get photocopies in a Spanish class. I am a visual person as well. I usually take my glasses off to read small print.
gpro99 2 years ago
Same. My glasses make the print smaller. I tried glasses that made print bigger, but it gave me a headache after reading several minutes. Now i am in college, and i also don't have a driver license. It's a hassle riding the bus or getting someone to drive me.
wassabimuffin 2 years ago
In college as well, take the bus also, or ride the bike. I feel ya. It is really going to be a doosy not being able to drive. . .
gpro99 2 years ago
yeah...they have a surgery, but it only improves our eyes about 20%, hopefully they're going to have a surgery that cures this.
wassabimuffin 2 years ago
hey i have the same thing. How do you deal with school and sports. Do you have a drivers license
wassabimuffin 2 years ago
School is tough, for sure. Sit in front every time. I did sports in middle school and high school, CN made it more difficult. Today, still hard. No drivers license, I don't drive at all.
gpro99 2 years ago
you have really pretty eyes.
imtoos0ber 2 years ago
I have it too :(
fadi95gt 2 years ago
i hate my eyes to they move all the time, and i never know when they are or anent moving.I also hate what other people say when they notice that my eyes move. im 16 so i kinda know how to deal with it but not always if any 1 has any advice please share it....
pinkblonde1417 2 years ago
Im with ya all the way. When I am relaxed and not tired my nystagmus seems to be the least noticeable. My only advise would be to stay relaxed. . .
gpro99 2 years ago
I have it,too.LOL, Same thing, tilted head most of the time!!It gets worse when I want to stop it at an interview or talking with someone especial!!I hate it when that happens!!But mostly, it happens when ppl are more than 2feet away from me! Anybody knows if the movement slows down with age or not?I'm 25 and I don't really know myself if they move slower than before or not!!
imee20ir 2 years ago
Same here man. During interviews I am very self conscious. Have you been told that your head shakes back and forth? I think mine does this to try to correct the shaking of they eyes by following them..
gpro99 2 years ago
I don't think my head shakes, maybe slightly and sometimes, but no one has told me that!but definitely I tilt my head to the right!I've been told that!
imee20ir 2 years ago
If I am concentrating my head shakes and sometimes my hands move with my eyes when reading if I am stressed.
SunyDay76 1 year ago
@SunyDay76 i have a same problem like u please give some guideliness to reduce this problem. thanq...
ravisanka9 1 year ago
This has been flagged as spam show
@SunyDay76 i have a same problem like u please give some guideliness to reduce this problem. thanq...my mail id is...ravisanka9@gmail.com
ravisanka9 1 year ago
i have that i was born with and it even dosent when i sleep , sometimes i notice it when im really stressed or super tired
etnies45672 2 years ago 2
I hate it....... My eyes move all the time, and i dont notice it, i even look in the mirrior and dont notice it, i wouldnt beleive i had it, if it werent for people asking me every 2 seconds...i hate it so much, i dont even want to talk to proplr, its awful and i cant stand it...how old are you btw?
blondsarehot335 2 years ago
You're lucky that you dont notice it. Mine is pretty bad. Its horrible in the morning. I don't think it is possible to see the movement in a mirror, Ive never been able to. I'm 19, btw.
gpro99 2 years ago
oh im only 13, so i guess youve had some more expeirence living with it! I feel so weird talking to people like i dont want to look at them! Is it the same for you?
blondsarehot335 2 years ago
Exactly the same. Very self conscious of it.
gpro99 2 years ago
ive never met anybody else with CN it feels good having somone to rlate to LOL
blondsarehot335 2 years ago
OMG this totaly has a social impact.....i dont even want to go to school anymore
blondsarehot335 2 years ago
You have nice eyes. I like the songs you use too.
imanelem 2 years ago
did this start out intermittently? or were they always constantly moving? i dont have money to go to the doctor, but my eyes started doing what yours do a year ago but its not all the time, and for not very long. it will happen a few to several times a day depending on my activities and when they move side to side its only for a second, but ive learned to just ignore it , do you have any advice to offer from what you know
twyliteskyz 2 years ago
Oh huge social issues.. Always self conscious. Talking to girls, driving and interviews are the worst. Nystagmus sucks, that's all there is to it.
gpro99 2 years ago
I have pretty severe nystagmus, my eyes rotate in a circle VERY rapidly if I try to look at something straight on like a normal person. I thought of a good example to emulate kind of what it's like for me. Take a laser pointer, and hold it still. Then start rapidly spinning it in a circle as fast as you can, that's what the still dot would look like to me. If I try to hold my eyes still in a normal position they literally rotate so fast that the dot almost looks like
ArtyRaws 2 years ago
my son has this as well he also has strabismus he had surgery when he was 6 months old. this past year or two his eyes got worse he gets alot of headaches. so i contacted this dr. burnstine the first doctor to do this surgery ever. and he examined my son. the surgery was not done correctly so he has to have it again. akron ohio is only 2 hrs from us so he's the man we want. My son is 10 now.
danieyellen 2 years ago
needless to say......we are very worried.
danieyellen 2 years ago
I had surgery when I was 15 to shorten eye muscles so I don't have to tilt my head as far to the left (to see out stronger right side) It helped a little in vision but I had an influx of pestering for wearing sunglasses and having blood-red eyes for a couple weeks. For those still in the middle of adolestents or early years, it gets better. I go weeks without even thinking about CN. Buit when I meet new people, I have to go thru the routine of explaining myself.
mike9880 2 years ago
Glad to hear that it gets better! That is what I have been wondering. I just had a recent appointment with my eye doctor and my vision has increased within the last year from 40/60 to 30/60. From 18 years of age to 19. Only thing that worries me is if I will ever feel comfortable enough to drive one day..
gpro99 2 years ago
i was wondering why your eyes were shaking, mike
garrettanderson983 2 years ago
I've suffered from CN for nearly 29 years. gpro99, thanks for posting this and starting a dicussion on the subject. Reading these comments were a mixture of laughter and sadness. Its nice to remember I'm not alone. But I too was tormented as a youth for my "googely eyes". But as I grew older, the osolations slowed and I became more confortable with myself. I am still very self consciece about my head bobble though. I'm sick of people asking me "whyat are you saying no about?"
mike9880 2 years ago
you know, I'd never seen nystagmus before. I have it alot better than most: I'm able to drive with glasses, and as of my last eye test I think my vision is 20/45. I don't ever get attacks, and my vision is only slightly impaired in my right eye. I got a time of it in grade school, and now I see why. I filmed myself, and it's extremely noticeable and 'weird'. Now I understand why kids made fun of me and why people look at me weird, especially because no one has heard of it before.
JTOdesign 2 years ago
though, I'm on my way to being a professional concept artist and I doubt I'll ever get surgery. Even if my eyes get worse, I'm much more afraid of having a knife near them, because being that one in a bunch of millions isn't a chance I'm gonna take... My condolences go out to everyone who has truly suffered at the hands of CN. Hopefully you will all be able to overcome it and follow your ambitions.
JTOdesign 2 years ago
I thought an astigmatism is when one eye looks straight and the other inwards or outwards?
is that right
Foyder 2 years ago
No, astigmatism is when your eyes are shaped like a football. A kind of curvature that messes up your vision.
gpro99 2 years ago
Wow! Listening to all the comments regarding how nystagmus has negatively effected your life makes my heart break. My son is 3 months old and he has been diagnosed with nystagmus. Grayson, I am so grateful for your video and your ability to help people feel like they are not alone. Your honesty on the subject is refreshing and it's great to hear young peoples perspective.
candymom40 2 years ago
That's strabismus
spjunkies 2 years ago
Hey I have nystagmus too
And Im at school
the bullying is horrible
chloem86 2 years ago
Hi have you consider an surgery? my daughter has nystagmus and we are locking for a soltion för her!
Ekinnaj 2 years ago
Too expensive. Probably a high risk involved as well. Maybe later in life. I have looked into it though.
gpro99 2 years ago
man i can;t shave left side of my face ,& it takes me nearly 10-15mins b4 i can drive(day only) to stabilize my eyes ,and i can't look directly 2wards ppl ,i have to tild my head like maniac ....
:(
amarbir22 2 years ago
I can't even see the left side of my face in the mirror lol. I have to tilt my head to the left too. I don't drive at all.
gpro99 2 years ago
wtf is dis ,ya n most of us can't c left side . y ,.? some brain problem ,please explain someone
amarbir22 2 years ago
I believe it has to do with the muscles that control the eye; they must be weak looking that direction, increasing the shakiness causing us not to be able to see our left side.
gpro99 2 years ago
It's so nice to know there are others out there! I always felt so alone honestly and something I never talked about because it's the one thing that I hate so much about myself. It seems that we are all miserable about it.
PippaLopps 2 years ago
Hey guys! Let me join the club here! I've got CN too! Oh the fun and thrils of it! When I was a kid I was totally made fun of! Totally traumatized me...... I feel like it's ruined my life honestly......
PippaLopps 2 years ago
Right there with ya, bud.
gpro99 2 years ago
mind pming me what are the symptoms of this as far as vision is concerned?
ConstantC4 2 years ago
Usually can't focus on distant objects, vision is always shaky; unless in the right scenario were the distance and angle are right. It's almost as if I am constantly drunk, as far as vision is concerned. :)
gpro99 2 years ago
That really sucks..... You know if I were at the right position aka job I could design you guys adaptive glasses... bscly a sensor and dual lens glasses with a small lens that tilts images to stabilize movements so it could be easier to read stuff...
nothing complex really but probably usefull for the few that suffer from congenital nystygmus / didn't fix theirs yet.
ConstantC4 2 years ago
After making some long distance trips to meet with some neuro-opthamologists, I came to find that anxiety levels and eye movement were often linked in congenital nystagmus. I was prescribed an anti-anxiety medication known as Klonopin. I have always said that I would never take 'psychiatric meds' but these pills have truly helped me. My nystagmus is still present, but it is always at the same level, despite my stress. My driving has improved as well... I am just overall much more confident.
FenderFanatic 2 years ago
Comment removed
merriemaiden 2 years ago
hey did it helped a lot ,,plz mail me for the details medications ....really in need of help
amarbir22 2 years ago
I have a positive update about my Nystagmus position. Hopefully this will help some of you:
At the beginning of the year I had completely had it with my inability to see. It felt like it was controlling my life and I wanted it corrected. You'll see I made a comment on this video long ago, and I feel even better after reading all of these posts. All of the descriptions are flawless in describing the terrible effects, especially those describing the dizziness, dissociation, confusion, and anxiety.
FenderFanatic 2 years ago
nystagmus is a ocular hereditary disease.
if you're the female,then your mom is
the carrier and your father are affected.
if you're the male,then your mother is the obligate carrier female , but your father is unknown,because it's a X-linked congenital disease.
lovelybones0401 2 years ago
Thank you for posting this. I was thinking recently of making a video to raise people's awareness about nystagmus and astigmatism, but as usual I felt afraid and self-conscious. So I searched and found this. Reading the comments here, although it has re-awakened painful memories, has made me feel much less alone.
Interviews and trying to approach new people are hard, and I am sad about not being able to act in films...does anyone know of a film which featured someone with nystagmus?
Thanks ^.^
StarfireTonight 2 years ago
I remeber seeing two actors with it. A woman on a soap opera in the 80's and a guy who was on one episode of XFiles.
SunyDay76 1 year ago
does anyone know if contacts fix Nystagmus? I am 18 and i have gone through school without glasses or anything its hard sometimes but i just move up when i have to. The main reason i want contacts is for better vision when driving so i dont die but i dont know if contacts help
nickd033 2 years ago
I also have congenital Nystagmus. I had corrective surgery done when I was 4 by Dr. Saunders at MUSC in Charleston, SC. My eyes still move horiztonal but its very slight, and usually only when I'm tired. I have 20/70 vision, 20/35 with glasses.
foehammerone 2 years ago
that is very characteristic of congenital nystagmus, in fact the only way u can see your eyes moving is on a video recording. Most people with this kind of nystahmus dont believe they have until they see a recording
badmrfrost 2 years ago
you know u gotta wonder if we cant see our eyes move in the mirror..then maybe their is a way to train our eyes to stop doing this...if they stoped their then maybe their is another way to treat this ( i have nystagmus as well)
KingXgenesis 2 years ago
Hi i have your same problem. I am curious about the fact that i don´t notice it when i look at my eyes in front of a mirror. Do this happens to any of you? thanks
luisusv 2 years ago
I cant see my eyes move in front of the mirror either. Don't know why that is.
gpro99 2 years ago
with other people is the same, when i look in the mirror and try to follow my eyes, it is impossible because we follow our own pupil, it is like we are watching our eye. when we move our eye, it moves in the mirror too, so we don't see the difference.
svetaukraine 2 years ago
Is this that video of a guy watching badminton?
Budkingg 2 years ago
You got very beautiful eyes.. where are u from?
Lashkyrie 3 years ago
Hi Lashkyrie, thanks for the compliment! I'm from Arizona, how about you?
gpro99 3 years ago
hi! i'm from Malaysia... thanks for the reply... ;)
Lashkyrie 2 years ago
That comment was intended for karmilovich by the way. One time I was going to the movies with a friend and we got pulled over for speeding. The cops frisked us down because they noticed my nystagmus. When people are drunk they have nystagmus so the cops checked my eyes. They frisked us and searched the truck for an hour and caused me to miss my movie. Has anyone else had a simiar situation? lulz
GEARS00095584 3 years ago
I asked for a note from my eye doctor specifically for this purpose. Did you tell the cop that you had Nystagmus?
gpro99 3 years ago
That's good to know. A lot of what I've read, people with Nystagmus can't drive so I'm glad to read that many do. My son is only 4 so we've got many years to go. The doctor says he has poor vision and his glasses won't correct his astigmatism but they will improve it (20/300 far.) but yet he's been reading since age 3 & is reading even better now that he's four (of course the print is larger in what he reads) I've began talking to him about his Nystag.& trying to prepare him 4 any teasing.
karmilovich 3 years ago
does having that hurt ur eyes since they're always moving?
joaneliz24 3 years ago
No, it doesn't hurt. I get headaches more often though.
gpro99 3 years ago
Ahh, I fucking hate Nystagmus. I have it too. It bothers me that there isn't really a cure for it and I think most people would view it as a cosmetic thing anyway, but they don't know the emotional problems that come with it, which I believe are worse than the physical ones.
JollyMe08 3 years ago
I have Congenital Nystagmus and after acupuncture, vision went from 20/50 to 20/30, movement went from 11mm to 3mm not noticeable. Also NeuroFeedback works well but it takes 20 or so sessions and is expensive (I have spoken to a few NF docs that has eliminated their patients Nystagmus using NF. I tried the surgery when I was 21 and it didnt do anything apart from probably cause a load of scar tissue! Message me if you want any info on these 2 treatments. Sharon (UK native now in Canada).
TorontoTottie 3 years ago
hey pinback! i love this band!
michywhacks 3 years ago
I have it as well ;/ I don't need to wear glasses and I do everything to hide it. It makes things more difficult with everything as girls,work, meeting new people etc. :( It's horrible;/
brachypelma131 3 years ago
I go through the same things man. I am very self conscious about it when taking to girls.
gpro99 3 years ago
My 4 yr. old son was born with nystagmus and his sense of hearing and memory are SO good. He started reading at age 3 and I somehow attribute his "smartness" to his nystagmus. SInce he's only 4 he can't really describe what he sees. SInce you are older, I was hoping you could give me some insight as to what someone with nystagmus sees. I was surprised he could read since his doctor said he has poor vision and a stigmatism. He compensates well. Can people w/ nystagmus drive?
karmilovich 3 years ago
Hello karmilovich, you have some excellent questions. I also have superior hearing that I believe is due to my vision/nystagmus. When I was growing up reading was very frustrating for me; I would get headaches after long periods of time. Looking at things to my left (without turning my head) shake like crazy. Things straight ahead still appear to be wiggling. Looking at things slightly to the right is the only way I am able focus. I could drive but I hate driving, b/c of the nystagmus.
gpro99 3 years ago
I can describe what your son is seeing. When you spin in circles and get dizzy, your eyes shake the same way. If you turn your head a certain way, you'll see better. I have nystagmus and i drive but it's difficult to drive at night and in unfamiliar places. College and job interviews are tremendously difficult. Also, my parents were cruel to me. I started making C's in college because i didn't want to do class presentations and they didn't understand Nystagmus causes major anxiety sometimes.
GEARS00095584 3 years ago
i have 20/20 vision
and you know i kinda feel sorry for you..
that should be giving you a hard time..
but i think you've got nice eyes though =T
cadburylaine 3 years ago
It does make things more difficult.. Thanks for the compliment! :)
gpro99 3 years ago
My son has this condition. He is 19 months old right now. He has begun to tilt his head in order to stop the shaking and see straight. What are your thoughts on surgery to help with the nystagmus??
Thanks.
farmersporch 3 years ago
My parents also noticed me tilting my head to compensate early on too. I don't know enough about the surgery's in order to comment on them. I would say go for it, it's worth a shot.
gpro99 3 years ago
I thought glasses couldn't help Nystagmus. Looks like your prescription is around -6 or so. I disagree with your assessment : your eyesight will NOT get worse with age, any more than with other people with normal eyesight. If you're now 18 or 19, you're pretty well done with deteriorating eyesight. Just protect whatever sight you have and you'll be all right. Take care.
ylate 3 years ago
my best friend he has this. he says everything shakes when not focused.
SameaMari 3 years ago
if you don't mind me asking, what is the perscription on your glasses.
TriviuMFreaK941 3 years ago
My vision is horrible. Even with glasses my vision is 40/60. They say that is as good as it's gonna get and continue getting worse with age..
gpro99 3 years ago
that sucks.
i just happened to be youtubeing and i came accross this which had nothing to do with what i had originally searched. i was watching daath, and somehow related videos took me here... lol
but thanks for the answer. onemore question though.
do you know what number they are? like a -5.00 or -6.00 etc?
TriviuMFreaK941 3 years ago
I dunno.
gpro99 3 years ago
oh, ok. :)
TriviuMFreaK941 3 years ago
ahh i hate that and I hate that my eyes do it to.
i just dont like when ppl are like whats wrong with your eyes.But ive had it for a long time so im use to it
kilooppee 3 years ago
Yep, it's uncontrollable.
gpro99 3 years ago
Whoa, do your eyes do this all the time?
xsuzywillig 3 years ago
Yeah its hard i wish there was a way to hide it i mean going through being young and getting cold crazy eyes ect....its hard and i just want to Fuck up everyone who says something about it. I hope there is a way to soon hide it without surgery.
2MBSTOWN 3 years ago
Ooops I meant I have Nystagmus as bad or even worse as yours (got the two words mixed up.
My eye movement is so horrible.
Starya7 3 years ago
My astigmatism is as bad or even worse than yours is. I know what its like. I can't even look people in the face. People used to make fun of my eyes a lot when I was young.
I also have Nystagmus as well.
Starya7 3 years ago
I have congenital nystagmus caused by ocular albinism. I've been wearing rigid gas permeable (hard) contact lenses and they seem to improve the shaking. Without my glasses/contacts, my vision is 20/200, so I need a strong prescription. I also have amblyopia and astigmatism.
lilblondehooker 3 years ago
its now in my family too.
a young boy 3 years old . broun eyes
cba999casey 3 years ago
I saw someone with nystagmus on tv and i spent an hour trying to find out what it was called, i've read about it on a few websites and they all say it makes it hard to see and some are blind but it dosen't say what things look like to people with nystagmus. And to the people who were teased, personally i like it and some people will just always be jerks.
x6al3ex 3 years ago
I was born with brusing to the side of my head and thats what every1 seems to think caused my nystag.99% of the time im not ashamed of having nystag ill hold my head on what ever angle i want and ill blink as much as i like to keep my eyes steady.Ive NEVER wanted glasses or contacts and i pasted my drivers licence with some sneekyness.i beleive if i didnt have nystagmus i wouldnt be who i am 2day i'd be a totally different person and i wouldnt want that.So live it there so much out there
hhaammiisshh 3 years ago
hi i have nystag as well and am having driving lessons with no problems but am dreading reading the number plate before the practical how did you get through it
fmmking66 3 years ago
I'm 31 and have nystagmus as well. Fortunately, it's mostly controllable. It is only a problem when looking left or right, when I'm really tired or when trying to read those scrolling marquee-type signs. (alcohol/caffeine affect it too but I don't use them anymore)
I think it's harder when you're young, because other younger people will be put off by it. I found as I've gotten older, other people aren't really concerned about it. They may ask, but then we move on. No teasing or anything.
reinventingMia 3 years ago
This is a nice post. I'm glad to see I'm not the only one that has. I'm a 29yr old female who has had it since birth. Luckily I can look at things without stuff moving b/c my brain has compensated but geez kids were so mean to me in school as a child. I have had social issues also. I've been told I'm very attractive but with my eyes jumping around I dont feel that way. Its so hard to look people in the eye. Please let me know if any of you have found out how to deal with this.
Cybellarain 3 years ago
I have always been self conscious about my eyes. Sometimes while talking to someone I can see that confused look in their face right before they are about to ask me why my are going crazy, I tell them that I have nystagmus and my eyes shake back and forth, and the conversation carries on. I wanted to ask you how your brain was able to compensate and at what age did you notice the shaking decrease? I am 18 now and it has been pretty much constant, no changes at all. Thanks!
gpro99 3 years ago
Well as I understand it I was born with it and somehow my brain adjusted. My eyes can jump around but yet I can look look at something and it be still and focused. I guess I'm gonna have to be more assertive with people about it. Have you found it true that since you have a vision problem do you try to compensate in other areas? I do. I'm a college student and I make it a point to keep a 4.0 so despite all the bad the vision problem has made me stronger.
Cybellarain 3 years ago
hey man i have the same condition since birth, im 16 but i was wondering have you ever tried focousing into a mirror and they stoped moving? because my eyes move all the time but i can make them stop if i focous into a mirror into my own eyes
KingXgenesis 3 years ago
Hey bro, thanks for the comment. I can't control my nystagmus but I can slow it down by slightly tilting my head to the side, that puts everything into focus. If my head is straight up and down I can't control the shaking at all, it becomes very rapid. Later
gpro99 3 years ago
o ok thanks for the reply
KingXgenesis 3 years ago
I was born with Nystagmus, I'm now 27 years old it was very hard for me as a child growing up with it. I was always called typewritter eyes and I was afraid to look people in the face. I thought I was the only one who had it in my family. I have a cusion who had it but she got it corrected at a younger age. I now wear contacts it's much better than glasses cause when my eyes move the contact lens follow the eye. Question is this a trait that can be past down to your children>
darkland22 3 years ago
I was told that I am unable to wear contacts because my eyes would shake them right out, lol. And that they would be so thick my vision is so poor that they would be too uncomfortable to wear.
My Nystagmus wasn't passed down to me, it was caused at birth. The story goes that I suffocated for a brief moment during birth and that damaged a part of the brain that has to do with controlling eyes. Something to that effect.
Thanks for the comment.
gpro99 3 years ago
I too was born with it. I think that my parents stated that the Emboli cord was wrapped around my head when I was born. Doctors said that I would grow out of it but I never did. I hope to 1 day get over being ashamed of it.
darkland22 3 years ago
I also have this and like you, gpro99 and darkland22, I suffocated during birth with the embolical cord. No one in my family has it.
Thanks for the info :)
ManekiSE 3 years ago
@ManekiSE
To gpro99, darkland22 and ManekiSE: My 10 year old was also born with Nystagmus. I always thought this condition occurred during birth because of the same conditions you describe, but doctors will never accept this responsibility. NO ONE in my family or my wife's has had it or even heard about it. With technology now days doctors SHOULD know if a baby's head or neck is wrapped around the cord or could be wrapped during birth and should perform a C section or something else.
jn151515 11 months ago
at least you dont see all the thing moving
mrmonter 3 years ago
yaa i have the same thing and im still in school kids really are dicks to people who have this
KingXgenesis 3 years ago
wow that's really noticeable. i have a friend who is legally blind and her eyes shake too but not as much. thanks for posting this informative vid!
ahaili 3 years ago
My bad, didn't read the description.
DavinTerrizzi 3 years ago
What's the music? It's very nice.
I have nystagmus too. I basically cannot look people straight in the eye.
DavinTerrizzi 3 years ago
Are you legally blind? Can you drive?
squerlhide 3 years ago
I'm not legally blind. I could drive, I passed the eye test for the drivers license, just barely; but I don't feel confident enough in my seeing abilities to want to drive.
gpro99 3 years ago
I am in the exact same position! I just never want to drive because I cannot hold a concentration to the center of the road. I'm okay in familiar areas, but it would be impossible to drive somewhere new. Nystagmus sucks.
FenderFanatic 3 years ago
Same here. But I had to get a waver for my vision test.
Makachu 3 years ago
There are new drug trials being carried out at Leicester uni in england for nystagmus.
dunstun365 3 years ago
i have astigmatism...but im not sure if mine is the same as yours...my head shakes all the time along with my eyes, but when i was young i had an eye surgery to fix one of my eyes, the one that was worked on got infected so they both had to be worked on...i had the eye bandages on for about a month, now all i have is a lazy eye, but my head shakes and my eyes go side to side....seriously i jus want to know if other people have the same problem..thanks
Nware3 3 years ago
Sometimes while watching a movie or at a basketball game, someone will bring it to my attention that my head is shaking back and forth, like a bobble-head. So to answer your quesstion, yes, my head wobbles side to side when I am focused in on something, and my eyes are always shaking back and forth. Did your surgery help? Thanks.
gpro99 3 years ago
yes it did, but because of the infection it jus messed them up again..lol
Nware3 3 years ago