Congenital Nystagmus

[whistlebug23]

My friend has this. In our group of friends, we don't even take note of it. He's basically your normal 19-year-old.

[GoodMorningSydney]

How aweful it is not to dare looking people in th eyes.

[GoodMorningSydney]

I have this too...

[tiffinywildcat]

THIS IS AWFUL ......AND BLOODY SCARY

[sleep1937]

what's with the music?!

[dbhost]

As a 42 year old male that has been living with Congenital Nystagmus (Diagnosed at 4 years old) I can honestly say that although I am no fan of this particular medical issue, I can certainly go the rest of my life without surgery. At least in my case, it's just not that intrusive.

[XoctoXdinoXroboX]

god that video was really creepy.

i hope i dont have this...

[tobecomemore]

14/10/2011 ... its nice to know that iam not alone , for the longest time i thought i was . there should be more concerne with this that what was on u tube ... Congencital Nystagmaus JIM ...

[TheOnlyGHero09]

@tobecomemore i also have this condition. i forget i have it until someone brings it up. it is not a very pleseant thing to deal with

[Axxoist]

Did you really have to use unfinished sentences in each scene?

[AJskullz09]

I also have Congenital Nystagmus it also causes my head to shake it is soo annoying the sad thing its gonna stay with me forever

[quinny44]

@AJskullz09 is it that sad? some people grow up without limbs or completely blind, so look at the positives. I had issues with my nystagmus and you do grow to accept, and it makes you who you are x

[AJskullz09]

@quinny44 no im not says its that bad it can just be annoying when reading and doing other stuff but styll we are blessed to be able to see and walk and do other thing in life

[Talmanes]

You may want to redo this at some point without the mopey music and the random capitalization and typographical errors (two "bothers"?).

[gmikoner]

they look like they're tripping balls

[Vilmacalewaert]

My 16 years old son with down syndrome has nistagmus.  As I see there are many people with it. My question to people who has nistagmus is: How clear do you see, can you focus normally or there is an alteration in visioning, do your eyes become tired? what is the sensation you feel? Sorry to ask but my son cannot express himself.

[nealey2k7]

@Vilmacalewaert

you cant tell sometimes but when you try focus it is pretty hard to. yes the eyes can tend to get tired depending on what Im doing that is. Its hard to look people in the eye because I don't think both of them focus on the same spot at the same time if this makes sense. I don't really feel my eyes shaking but I guess that depends on how bad they shake with the condition. Hope that helped, it is pretty hard to describe so did the best I could. N

[quinny44]

@Vilmacalewaert you dont feel anything at all, and it looks the same as anyone elses vision, as when you have it from birth the brain learns to see even with the movement. Sometimes there are problems focusing and sometimes when tired or stressed it becomes harder, but other than, you can barely feel anything.

[AGSystem27]

what is the name of the song?

[albertescamilla]

some people cause this on themselves by taking research chemicals and ecstasy.

[LeeMP1986]

@albertescamilla

Way to show your ignorance there pal, go get a clue.

[albertescamilla]

@LeeMP1986 what are you talking about? in what way have i shown my 'ignorance'?? can you explain to me what i said wrong? in case if you didn't know MDMA and alcohol can cause nystagmus too. it isn't going to trigger it to where they are going to need surgery, but it still causes it for reasons unknown.

[LeeMP1986]

@albertescamilla Congenital Nystagmus is HEREDITARY, Fair enough if you posted that comment on a video just called "Nystagmus" or "Acquired Nystagmus" as drugs can cause these but for those of us that have been born with it, like myself, your comment can be infuriating.

I could have said this to begin with instead of just insulting you for which I apologise, it's just frustrating to have a condition that people don't know much about to begin with and then have misinformation posted too.

[quinny44]

@albertescamilla question: how much of an idiot are you? you clearly have no respect for anyone living with condition that they inherited...would you say to a clip of a kid in a wheelchair 'well, soemtimes people can get drunk and fall over and that causes loss of leg use'?

no, you wouldnt, so have respect

[tinjmail]

can someone tell me what's the name of the music?

[brettryan]

I am 32 and dealt with this all my life. I have nystagmus, underdeveloped optical nerve, no peripheral vision, left eye is almost blind and turned in and astigmatism. I can't drive due to these conditions. I not only wish there was a cure for just one of my conditions, but I wish the govt would give me assistance so I don't have to walk to work for 5 k/m every day in the cold :(

[PuddingnShortbuses]

I'm 25, I have nystagmus and ocular albinism and astigmatism. I wish there was a cure for it all.

[CagedBirdInevitably2]

Hey I have Nystagmus! Join the club little girl!!

[SALVOTHESTONEDONE]

shees on PCP :O

[funkingfunking]

wtf is this !!!

[DrHakim1]

By the way, ((( methanol ))) poisoning led me here

[DrHakim1]

Cry People !!!

CRRRRYYYYYYY !!!!!!!

[escapegamer]

I have nystagmus too...due to the SCA8..

[Nislo12]

im having nystagmus, and something else with my neck, sometimes it is really hard to... well.. for example, read or play a game on my ds. everything moves and moves and when my eyes are not moving i see double. its just really really scary. But it also tells who i am...

[demonpulse2]

I suffer of this shit

[Teeny19951]

i have nystagmus astignitism & very poor vision. currently my vision is 20/200 w/out the use of my galsses my nystagmus is alot worse than this

[sweetpickles87]

@Teeny19951 You sound like me, I'm 23 but I also have an underlying eye disease called retinitis pigmentosa.

[Teeny19951]

i have nystagmus astignitism & very poor vision. currently my vision is 20/200 w/out the use of my galsses

[nealey2k7]

I have 3 conditions... nystagmus, stigmatism and (if the spelling is right) albinoculism. Doctors and optitions say theres no treatment. I dropped out of school coz i fell behind on all my coursework leading up to my exams and i didnt have any confidence in myself. Iv never come accross any1 else with the same or similor conditions, My eyes go blury and i have started to notice things moving slightly when i try and focus and im paranoid about what people think. Dont know why its just shit

[sweetpickles87]

@nealey2k7 Hey you sound like me too. I fell behind in school in the begining. I have nystagmus, had cataract surgery on both eyes and I have an underlying eye disease called retinitis pigmentosa. I am a member of the NFB, National Federation of the Blind. Trust me, there are a LOT of ppl like us. :)

[azncaramel69]

great video and thanks for sharing, i just came across the topic in my neuro rotation and wanted to see how it actually presents.... although, my only.... not complaint..... but i guess the only thing that weirded me out was the choice of music, hahaha, although, i guess choosing a rock song would be been just plain incongruous....

again thank you very much!

[AlphaSigmaDelta]

@azncaramel69 Shit same bro.

[softspoken0220]

I have aniridia and nystagmus I am so glad that others on here have nystagmus too I was feeling like I was alone.

[markusralus]

ur not alone.

[softspoken0220]

Theme from Love Story I love that song.

[CJEB4]

My son does this for hours sometimes he is 6 and has low functioning autism, the Dr's call it a "stim".

[velebr3]

I have similar thing but it is like 8x faster and I can do it on my own. This never happens without my own will except when I am really angry.

[johnr1031]

I'm guessing mine is very subtle compared to this. I can never see it happen in the mirror and I see pretty much straight.

[littleflowwer]

@johnr1031

So how did you knew you had it? Just wondering... Also, at work I feel like I'm slow at reading the numbers on a credit card and then typing them-- while others are fast at looking at something...hmmm

[johnr1031]

@littleflowwer from people telling me.

[Burngobingocaller]

I have Nystagmus (although no way near as bad as this)

I cant see my eyes moving when i look in the mirror, even though i have been told its happening.

I have been told that i look out of the corner of my eye when focusing on things and i have incredably bad vision (I cant focus on anything further than 30 cm away)

Other than that i dont have any problems at all

(Allthough i beleive it has caused my eyes to become hyper sensitive but maybe not as my dad has this but not Nystagmus )

[markmcilkenny]

@Burngobingocaller you cant see your eyes flicker in the mirror because you see tru the eyes that are flickering haha

[computech1000]

Look guys i have this and 2 other problems and i can cope so stop making a bug deal out of it... dont make so much of a thing out of it and why the need for the sad music

[hubbabubbamax000]

looks like she's rolling

[FrancescaM1888]

If I can cope with Nytagmus and another underlying eye condition then so can you 

[leahcimrac]

I have Congenital Nystagmus. I'm going to see a specialist soon in Swansea to see if there is anything that can be done. I have bad photophobia as a result of my Nystagmus and thats the one thing i would like to sort out more than anything.

[Zolofgonnakillallya]

I wish more doctors knew more about this.

I hate having it and I hate living with it.

[ts6408]

i have that as well. I am considered legally blind and the doctors told me I could never drive and quite frankly i believe them. My vision isn't all that great and I can hardly read anything on the road. I am 20 years old and tired of having to rely on people to take me places, so if there is something that could improve my vision by at least a little bit i want to talk to the doctor that is performing this surgery lol Best of luck to all y'all though:)

[shizukamelodi]

i HAVE THAT i WAS BOPRN WITH ALAZY EYE AND HAD IT OPERATED ON LIKE 12 YEARS AGO AND I HAVE BEEN ABLE TO THAT EVER SINCE DOCTORS SAY IT'S FINE AND IM OK BUT I DUNNO X

[marcuscorrentus]

trippin balls

[panteritadj]

ola yo tengo nistagmuss tb este es mi msn para alguien q le interese saber algo so de peru tengo 20 años me llamo juan

[secretninja111]

i have that i dont know if its really bad my mom said it was not to bad

[oiyabastard]

my cat has that , im sorry u guys do but you can see well i hope wtf is with the godfather theme?>

[HazenMustaine]

I'm 24 and have lived my whole life with nystagmus. Maybe my case was minor, but I can drive and focus on things like reading and whatnot. Still, it's a bit unusual to see what we look like to others.

[delgadilloaaron]

I can do the same. My null point it great!

[JeRseybOy251]

@HazenMustaine they let u drive?

im 14 so i dont know if i can even drive, i mean i can see the road well but i guess its just what my eye doctor says.

[HazenMustaine]

@JeRseybOy251

When I was younger my eye doctor told me he wasn't sure if I would be able to. When I got old enough I went to the dmv and I did fine. I passed the vision test and the rest was fine.

[prithuadhikary]

Ok. Most of us who have nystagmus are fucked up. I can't drive. I feel afraid in the nights while walking on the road. Even when I close my eyes, my head feels like pendulum.I am fed up with it.

[JeRseybOy251]

@prithuadhikary i have it 2. its not that bad.

but then again mine is just minor.

[ayelentube]

sad

[XshanjidaX]

wow this is so freaky

[jimmysgirlxx]

I have this condition too. I've learned to live with it... A friend in high school years ago thought it was sexy! Go figure..

[tiarabaranes]

Dude all you have to do is put a book in front of you and no one would know...problem solved LOL

[puppylove226959]

So, to anyone who has this or knows alot about it: Can it possibly be Nystagmus, if a person closes their eyes and feel them quicky moving back and forth? Even if it only happens in the dark?

[pfftdudeguy]

I have this disorder and it bugs the hell of me, im so self conscience about it. i try to avoid eye contact with people cause I've notice if I try and focus on one thing for more than a few seconds they start shaking.

[Nerevar2]

same here

[zach45671]

@pfftdudeguy me to dude i hate it but ya got to live with it you know?

[markgg1]

woah... that little kid scared me a little... lol

Im a wuss

[premieremalemassage]

I have congenital nystagmus as well.

I just tell people that ever ask why it happens that it happens because there either boring or agitating me! And no I do it out my ass!!

[flackssssss]

i have it people always ask me stuff like "Can you see straight?" it gets kind of annoying that's is why i probably will not put any videos of me on youtube

[MissHappyAllTheTime]

I have nystagmus. I hate it sometimes.

[akiecoon]

I had nystagmus once when I did a bunch of random drugs in a pill press of an alien.

[nltate]

Thanks, this video was interesting. I watched it to help study for a clinical neuroanatomy exam.

[RebelButane]

I've had it from birth--just as bad as that little girl--and I don't have any problems otherwise.

It's a common problem tho. :] Always good to see someone else with it!

[TheSeanj16]

i have nystamus and marijuana helps a little bit but i have becuz very paranoid becuz everybody looks at my eyes

[Astrix321]

just get some indica and you wont get paranoia

[doggycoco]

wow i have nystagmus bt its no where nare as bad as tht lil girls, its more like the mothers, bt really theres no need for the sad music i live a normal life and do all the things a person with perfect vision can.

[Zutaralove94]

I have Nystagmus too.

It's hard to go through life with but I do. :(

[LovelyYTRocks]

Stop moving your eyes.

[itsbenjamin]

Asshole!

[steakabuser]

creepy music.

[youcabize]

is there a real need for the sad music?

[Spunkee17]

Sometimes when I look at something up close my eyes do something like that for a split second and stops. The reason I know is because my visions gets shaky like my eyes do and it happens very rarely. I wonder what that is...

[barrigon1110]

balance problem

[Spunkee17]

What kind of balance problem? My physical balance is actually pretty good.

[choppy2mella]

@Spunkee17 only difference is people with congenital/infantry nystagmus don't see things wiggle....nor can we see it in the mirror. Jus from what ive read our brains are geared up at a young age to make everything as straight and clear as possible. still wish i was born without it though, every fuckin day

[SaintISinner]

Scary music and eyes as well... ^_^

[lovelybones0401]

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.

buy the way, the music is so..sad and so good.

[mecagoenbb]

Is that a song from Schindler's List?...NAhhh I don't remember where is that from or how is it called...can somebody tell me?

[meriscubi]

This is Lara's Song from Doxtor Zivagho :)

[JollyMe08]

I was thinking about getting that procedure done but I am a bit afraid of the risks.

[OLDBEATERSIX]

I have CN, but I can drive and do all that stuff, and played sports in back in my high school days. I even played a lil football for my university a couple semesters ago but had to quit because of inconveniences among other things.

[DOOPTICS]

im assuming it is INS??

[darkwestern]

lol genital

[longlivechrisnSyri]

I've heard of the procedure, but heard it's rare to get it done. I'm 18, have CN, but y optometrist seems to be a complete moron who never diagnosed me until I was 17. The only thing worse then having CN all your life is having it and not knowing it, wondering why you seem to have such a harder tie than the other kids with glasses, and why yours don't seem to work. *chuckle* But you wanna know the irony? I'm a proffesional artist, despite being partially sighted.

[CarlyJo130]

This ruined my life. I can't play sports.I always have to sit at the front of the classroom. I will be talking to somebody and they will point out that my eye is moving. Because I am not good at anything and I have really curly hair and my eyes move by themselves people call me a freak.or an outcast.The only thing I'm half way good at is music. I play 3 diffrent instruments and I sing and write songs. Doctors think it's because of Nystagmus. So maybe in the end it won't turn out so bad.

[OLDBEATERSIX]

U sound like me. Cept I only play two instruments, plus I was big enough to whoop the ass of anybody who had the audacity to call me a freak. Im 21 now and I can tell you its gonna be all good.

[sweetpickles87]

@OLDBEATERSIX Why did people call you a freak?

[OLDBEATERSIX]

@sweetpickles87 Cuz some people are born ignorant. Im old enough to understand that now. But that was a long time ago.

[JollyMe08]

You sound exactly like me, except I have no actual talent in anything. I also do not have curly hair, so maybe you aren't much like me after all... I just wanted to tell you, do NOT be ashamed of your curly hair. I absolutely adore curly hair (maybe it's because mine isn't, lol) but I think it's beautiful.

[hhaammiisshh]

Ive never heard of this either.Ive had experieces with other drugs that stop my eyes f@#$ing shaking for short intervals but yea you know.learn to live wit it>could be far worst off peace

[yesman605]

I'm 21 years old with CN, and I had never heard of this surgical procedure. However, I have read a study by British researches that have attempted to--with significant success--treat symptoms of nystagmus with the drugs memantine and gabapentine. Their conclusion was that the drugs indeed improved acuity and helped with the to and fro movement. I have not tried this yet, but I will begin treatment in two weeks time. Has anyone heard of this?

[FendersRule]

My best friend has this, about as bad as the girl in the video (Very beautiful girl by the way). His eyes move about that wide as well. He also has cognitive problems as well. He is considered legally blind. What are the details of the surgery, and the costs?

[squerlhide]

I have this. I'm legally blind. I wish they would bring a cure to the US! I would do ANYTHING to fix my eyes.

[mjdiver91]

there is a treatment for nystagmus. surgery on the muscles around the eye to trick the brain. i have nystagmus but it doesnt affect me very much so no need for me to do it.

[mulan00777]

I have a 3 months old daughter. Her eyes shake back and forth usually when she is being fed with bottle and sometimes when she is looking straight at me. Is that considered to be Nystagmus or it will go away with time?

I am really worried about her....

[radams170]

I have sent you a detailed message through youtube messages regarding the experiences we've had with our daughter. You may have noticed my posts below regarding the surgery options, should the need arise.

[txh26]

I also have congenital nystagmus, but mine, as compared to the girl is very mild.

[radams170]

My daughter has CN, with an extreme right null point. It was diagnosed at 2 months old. At not even 3 yrs old, she underwent the 4-muscle surgery (Kestenbaum) this week. Already, we are optimistic as it appears she is focusing in the center of her vision now. Any other parents considering: 1. Prepare for bloodshot and discomfort. 2. In our case, she didn't open her eyes for an extended period for the first 24 hours, and then did more and more over the next few days. I'll try to post more...

[radams170]

Exactly 2 weeks after the surgery now, and her eyes are noticably better. There is hardly any red remaining, only the far corners, and most of the swelling is gone. She continues to look at objects of interest in the center of her vision.

[radams170]

It's now 2 months and a few days after the surgery, and she continues to focus at the center of her vision.  A little bit of pinkness still remains in the far corners of her eyes. The doctor says everything is looking wonderful.

[angellovescats]

i have this same condition. I've been told it is more noticeable when I am mad or crying. I've never met anyone else with it, besides my father.

[dapletd]

the comments here are not worth much.I also have CNS and i am 48 so you cant tell me what i don't know.I feel for the children because i know what it is looking through hair eyes.I have had the surgery to move the eye mussels and for most people they can read at least one more line on the chart.There is no cure,the surgery just moves the eyes into the null position were the eyes move the least.

[mariomonterroso]

at least your null position is at the front// i have periodic alternating nystagmus.. my null psition is constantly moving .. sometimes to the left .. sometimes to the right .. sometimes the only thing i can see is my nose.. i wish i had a steady null position .. my life would be different

[MissDiCaprio]

I am 23 years old and i have a congenital nystagmus. I would just like to know what is the tittle of the music who accompagned this video ?

[cinemakid]

It's the theme from the movie "Love Story" (1970).

[superdupper999]

I have congential nystagmus. My doctor said there was nothing that she could do about it. I hate it so much..........

[DelennB5]

Hi, I'm studying medicine and I would like to know something about nystagmus (other people with congenital nystagmus may reply as well ofcourse). Do your eyes always make this movement? do you feel it? and how's your sight; can you see normally?

[mdc188]

Hi, I have congenital nystagmus, hopefully I can help you with you're questions:

1. My eye's don't always do it - it used to happen when I looked straight but after surgery it happens only when I look at an angle or have my head tilted.

2/3. I feel it in extreme cases but I can always tell when it's happening - my vision changes and it is incredibly hard to see and concentrate.

[DelennB5]

thanks a lot for your answer

[VampyreShonda]

Hi. I have this as well.

1. Yes, my eyes make this motion constantly, even while my eyes are closed. I can put my finger lightly over a closed eyelid and feel my eye moving to and fro beneath the lid.

2.Under certain circumstances. If I am very tired, I can't focus or see correctly and I can feel them move. Also, I can feel the motion if I look at an angle.

3. As long as I'm not tired, I can see a normal, unmoving picture, even when looking at n angle.

Hope this helps :D

[DavidEldridgePeacock]

ya thats exatly the same as me

[mariomonterroso]

with that surgery did they move your null position to the center? .. .. i cant get the surgery because my null position changes constantly. i heard that there is a surgery where they detach and rettach the muscles

[kawaiisakura92]

yeah... i had done a video to... Nystagmus outright suck unless when you are using it as a trump card. xD And I DO NOT want to go under the knife. O_O;;;

[ZidaneBiggestFan]

Thx so much Sarbjit

[jl0113]

The song is the Love Story theme, it's originally played on piano. Thanks for this video, it's helpful for visualizing nystagmus.

[ystheman]

i also would like to know what the name of this song is its so soothing!

[s3110950]

can you please tell me what the name of the song is? thanks

[cgtechboo]

i have aweful nystagmus. i'm legally blind. by my opthamologist says at this point there is nothing they can do. do idk.

[mattcroshaw]

I have congential nystagmus, and I had the kestenbaum procedure done and it has improved my vision to 20/20. I can now drive a car, and pretty much do anything

[cgtechboo]

thats awesome! my eye doctor is set on there being nothing they can do though. so idk.

[CybershulDotCom]

Is this person a specialist? A lot of optometrists are not aware of the most up to date developments in the area.

[cgtechboo]

well she is a lot better than the one we had before, i don't know. anyone know anyone good in the indianapolis area?

[mondobello]

Can you tell us about the procedure? I had an appointment at Moorfields Eye Hospital in London a while back where it was suggested and the specialist said I could do it if I wanted to but of course there are no guarantees.

Was it uncomfortable or painful?

[fmmking66]

Hi could you let me know who carried out the operation, I am writing from UK and cannot find any specialists here??

[rhammeken]

There is a nystagmus network in the UK - search it out and someone should be able to provide a doctor for you.

[David85swe]

i know exactually.. i have it too,. soo its just too accetpt and have a life who fits too you..

[hmmmindeed]

nice example of nystagmus, accompanied by very nice music. What else could a medical student ask for?!

[lfdo1]

The "Dell'Osso" procedure damps nystagmus allowing higher quality target foveation and improved visual function. It is thought to work by changing the proprioceptively controlled muscle tension, effectively reducing the gain (responsiveness) of the eye muscles to the presumably unchanged nystagmus signal from the brain. Besides the infantile nystagmus syndrome (INS, aka 'congenital' nystagmus), it also damps the pendular nystagmus of multiple sclerosis and downbeat nystagmus of unknown origin.

[sarbjitss]

Thanks :-)

Sarbjit

[kawaiisakura92]

I have this same problem, my eye soctor says it is a very strange case. I am very happy to see that a treatment is finally here

1 (I personally dont think I'd be ready for surgery) But, thanks.