I am a 22 year old girl with Nystagmus, video inside of it, and AMA.

OPs husband here.

It is incredibly useful, as her eyes stop shaking when she is drunk. It is the easiest indicator.

Your wife is beautiful and damn adorable.

pls dont

Shit, compliments can't be taken for what they are and not what negative shit lingers in your mind?

Not like I asked her to go to GW, damn.

Just so you know, I liked your comment and it made me smile. So thank you!

You are freakin' adorable!

Aww, thanks! That's super sweet of you.

[deleted]

I'm so glad that this made you feel better about yourself. I never knew what mine looked like either, that was one of the reasons why I made the video. When I told my mom she was like, "really? You've never seen it or noticed it?" It's odd how we perceive normal in everyone when for some, like us, it's not! You should film yours too, then you could see.

You can't see it in a mirror?

I can't see mine in the mirror. I don't know about QrazyKryptic

What aspects of your vision does this affect? Depth perception? Night vision? Focusing generally?

There's a couple of different parts so I'm going to break it down, hope that's fine.

• It effects my night vision because if I'm tired/ overly stressed/ or sometimes sick my Nystagmus goes a bit faster. I have what my parents and I call a "resting point" where I can slow it down and I turn my head to about 1 o'clock and look out of the corner of my eye. I then drive like that.

• LED lights really mess with my eyes too. It's hard for me to focus on them and I have to blink a lot.

• If I'm wearing my contacts my Nystagmus will move them around and I have to blink to "reset" them into the middle of my eye.

*I guess I have a bit of a problem with depth perception. It's hard for me to see things like food/ balls flying at me for me to catch.

*I usually don't have a problem with focusing, and I am ace at staring contests because I don't have to blink as much.

I can make my eyes do that on command. It must be a genetic thing, because my kiddos can do it as well.

I find that a lot of people can but then they usually get a headache because they are stressing the muscles. It can cause damage, but if you haven't seen any you're probably fine (my genetics teacher and I discussed that a while ago).

What happens if you get pulled over by a cop?

Haha! Okay, so funny story. My school does this health seminar thing where you can get free samples, learn about nutrition, basically stuff for college students to survive. Anyways, the cops show up every year with the drunk glasses and my friend wanted to try them. I was standing off to the side and one of the cops comes up to me and starts chatting and then says, "holy shit! You have Nystagmus, is it natural?"

I told him yes and he calls over all of the other cops, about seven others, and they all take turns looking at my eyes. Apparently they use people with natural Nystagmus in field tests to trip the guys up because people who are drunk can get Nystagmus.

But, I've never been pulled over so...I don't know, to answer your question. Sorry for the HIMYM response.

How I met Your Mother response? What does that mean?

Probably joking that she took way longer to answer the question than she had to, but we got a good story out of it.

Goddammit, Ted.

Bingo

Any way you could turn a profit from that? How exactly does the police academy "use" people with Nystagmus?

From what I know they use them in tests for their recruits(?) to see how they react to someone who has natural Nystagmus when they think the person is drunk. I don't know if you could make a profit, I never followed it because I was too busy with school.

If you close one eye with drunk goggles, you can almost see fine, just slightly blurry

I cannot.

Hey, OP, just wanted to send some positive feelings your way and thank you for doing the AMA.

I also have nystagmus (congenital, pendular)...worn glasses since I was three.

I've had a laundry-list of problems, including strabismus, nystagmus, hypoplastic discs, as well as having one eye farsighted, one eye nearsighted...

Growing up, my folks tried to find the cause of it and I bounced around doctors like a pinball machine. The muscle doctor said it was a neurological problem, the neurologist said it was a muscle problem, etc.

You mentioned you had a calm spot, which they call a null point. I had one, too, where if I tilted my head about 10 degrees counterclockwise, and pointed it slightly right, they would calm. When I was about 15 or 16, I had surgery to try to "correct" the null-point so it was straight forward. it was called a kestenbaum procedure, where they cut the muscles and shortened them a bit, to try to simulate the tension I felt at the null-point angle.

Well, that wasn't a good idea, because it essentially took away my null point.

My left eye is my extremely dominant eye, and over the years, I've been able to develop something of a new null point. Right eye is just all over the map, I can't really focus out of it well at all.

I grew up thinking I'd never be able to drive, it was so bad. Corrected vision even with glasses was around 20/50.

I then started looking into the benefits of LASIK surgery--It has the ability to fix non-spherical errors in vision, potentially correcting the vision better than glasses could (glasses can only fix very standard deviations). I did a ton of research, and ultimately decided to do it. Yes, they can do LASIK on a nystagmus patient, believe it or not. video, if interested

I had to go back six months later for a touch-up surgery, but now I test 20/25 and have my learner's permit (yay, 29 year old finally learning to drive)

I've looked into what treatment there is and have only found some results from a medical study in the UK on treating it with anti-seizure/anticonvulsive drugs called gabapenten and memantine (spelling?) ...One of these days, I'd like to find a good ophthalmologist who might be willing to try it. I have horrible depth perception, and even after the LASIK, I think i'll have to limit myself on when and where I drive.

I wrote up a long-ish document that I have in a PDF about my LASIK experience, and I believe I have the medical study somewhere on one of my hard drives, if you're ever interested in seeing them.

This got a little long, and I'm not sure the point of it, but such as it is, I thought it was cool to see another person with nystagmus here. I understand we're something of a rare breed. Only about 1 in 2000 people have this condition. Fewer still have it congenitally. Oftentimes it's the result of drug use or like in your case, a medical procedure gone awry.

Your comment about the kestenbaum procedure has made it so I can finally find information about what I was born with. My mom was pronouncing it wrong all these years. I was born with bilateral kestenbaum.

Sadly, I also cannot get LASIK because my vision has not stayed constant and continues to get worse, but oh well. I don't exactly mind wearing contacts and glasses.

serious question now, how much has this affected your life? was it hard to learn how to read when you were young? and did your sue parents because of what happened after surgery? and does it make you laugh/offended when somebody asks you to look straight into their eyes? ... I would fuck with people so hard lol

edit: tango dance edit

It has actually affected my life a lot. I adapted to the eye change fairly quickly, or more my brain did, because it rewired itself so that this was now normal. I've always enjoyed reading and haven't had too much trouble with it.

My parents have always treated me normally and encouraged me to do whatever I wanted to do in life. When kids did pick on me, they stuck up for me and encouraged me to just do well in my studies and hobbies to show them all, ahaha.

I did get picked on a lot though while growing up and a bit now. I've had kids call me Crazy Eyes McGee and things of the like, purposefully throw things at me they know I had difficulty seeing, and basically making fun of all parts of me because I also have a speech impediment. The most hurtful is when people yell at me to stop looking at them like that, as if I can control it. I always tell them it's not something I can control, but often they don't believe me.

I do like looking people in the eye to fuck with them though, especially if they just write me off as someone unimportant...haha, oops?

Having Nystagmus would make reading awesome! No more need to scan the pages actively anymore, your eyes do that shit on their own! Just practice how to speed read and you'll be settin' records baby! Records!

Horribly it doesn't work that way!

so hardcore... you have embodied the meaning of getting eye fucked lol...

have you ever tried looking down to tip of your nose? is it impossible because of your condition? srs question.

You mean like going cross eyed? I can do it but I have no clue how it looks from the outside.

Just asked my husband, apparently my eyes shake while crosseyed as well.

.< lol yeah that's was I meant.

edit: there is no way to fuckin edit this shit... pun is ruined lol

too bad, puns are my favorite jokes.

Ive had nystagmus my whole life. Pro tip: keep a doctors note in your car. Nystagmus is a symptom caused by many kinds of drugs and alcohol. If you get pulled over make sure to tell the cop you have a note! Ive been cuffed and tossed on the curb just for the old crazy eyes...

Whoa really! Thankfully I've never been pulled over but perhaps I should get one.

Funny story, my last day of high school one of the security guards I was friendly with came up to me and told me that they all thought I was on drugs because of my eyes. But, because I never showed any other symptoms they never took it to the principal. Man, that would have been fun...

Yup! Good thing to have. Do you ever catch yourself staring at lights that happen to be near your focal point (i think thats 3 oclock for you.) Happens to me all the time but i could be spacey...

(1 o'clock for me and then looking out of the corner of my eye). Never lights but I find myself just staring off into space and letting my eyes wiggle, it kinda messes with my vision and its a bit from to come out of.

Have you heard of Pruitt Taylor Vince? He's an actor that shares your condition. I first saw him on House, where that was the overlooked symptom that started House down his road to epiphany. Anyways, I've seen him in some other things, including Natural Born Killers, and seeing this reminded me of him. I guess I don't have a question, he's just a great actor that I feel you should he aware of!

Yep, I've seen him in a couple of things. I think it's great they use his Nystagmus in his acting.

I was just about to look up this actors name on IMDB, but juanjing beat me to it. I've enjoyed his work in movies and on tv for many years. I think the first time I saw him was in the movie Jacob's Ladder. He played a Vietnam Vet who was suffering with nightmarish visions and I thought it was amazing how he could move his eyes like that. Little did I know, then, that it was an actual condition. When I saw him again in a film I thought "why is he doing the same thing with his eyes?" LOL I did some quick research and that was how I learned about nystagmus.

Does the constant movement bother you at all? Is it even perceptible anymore?

Nope, I don't really notice it unless I'm trying to use a microscope or if I'm tired/ stressed and the stairs are made funny.

ALL GLORY TO THE HYPNOGIRL

YES, BOW BEFORE ME!

u must own sunglasses

Yep, I sneeze when I'm out in the sun otherwise. I don't think that's related to this though.

how do most people react to this when they meet you for the first time?

I suppose normally. Some people won't meet my eyes, some people stare more than normal as if to show it doesn't effect them, and some people start with, "I don't meant to offend..."

Did anyone do the "try-and-cover-up-the-smirk-when-trying-not-to-laugh-and-then-finally-burst-out-laughing-and-say-"I'm-sorry-but-that's-fuckin'-hilarious.-How-do-you-do-that?" Because that's what I'd do. And, being able to do that on demand would be boss!

No, no one's ever done that. Not sure how I would react in all honesty. I find it hard to not laugh when people won't meet my eyes, especially in a professional setting.

Really? Huh. There was a girl in my high school that could do that at will. Intruiging/funny/a little creepy all at once.

Glad to see it doesn't bother you.

And, you're cute as hell. Husband's a lucky guy.

Thanks! It does bother me sometimes, but there's nothing that can be done so...that's life.

I have voluntary Nystagmus- I used to freak all my friends out by shaking my eyes at them. When I shake my eyes, I can't see anything- can you see clearly when your eyes shake?

Yes, because my brain has rewired itself so that this is normal, when I wear my glasses. When I'm wearing my contacts I have to blink a bit more than normal to reset the lenses.

When you say the surgery was to correct your focal point, what do you mean? I have a friend whose eyes point in slightly different directions... was it like that?

No, they pointed the same direction but not straight on like everyone's do. I could only focus on people by looking out of the corner of my eye, there was no middle ground. My Mom always called it Bilateral Kesslebaum's, which I'm assuming is what the doctor told her, but I have never found anything on that and the people I have spoken to don't know about it either.

Hopefully that makes sense, I could draw up a picture in MS Paint if that would help.

edit: It's bilateral kestenbaum, finally learned what it is after all these years.

I mentioned this in a much longer reply to the main post, but I wonder if you had the same surgery I had, called a "Kestenbaum" procedure. It was an attempt to center my null point.

If that was the case, this surgery wouldn't have caused your nystagmus, but would have been an early attempt to help you live with it better. It sounds to me like yours was also congenital.

I did not have nystagmus before this procedure, to my knowledge, my focal point was simply off and this corrected that. However, reading the medical reports makes the kestenbaum fit and would fit my mom accidently remembering it as kesselbaum all these years.

That's interesting. I keep thinking you probably did have it, though, because everywhere I've heard kestenbaum used, it's for treating patients with nystagmus, whose null point is off to one side or the other--helps them center their gaze. Bilateral just means 'both sides', so it would mean you had the procedure done on both your eyes. Glad I could help you find the right term to search for after all these years! :)

Procedures can be used for other things if there is a chance that they can be used to fix other problems, as the medical article you linked to shows.

I am aware of what bilateral means and I did not have a null point at all, I could only look at someone out of the corner of my eyes because of how my eyes had formed while I was in the womb, at least that is the conclusion my genetics professor and I came to because there is no genetic background in my family for it. There was no nystagmus present as a young age, this can be seen in pictures from that time when compared to pictures now, as in, not screwed up by awkward eye position and my eyes are always looking out of the corner.

Thank you for providing me with a name and have a good day.

I totally interviewed a girl with that condition a few years ago. She didn't say anything and I sure as wasn't going to risk a lawsuit by asking, "So are your unusual eyes going to require extra sick days?"

Good to know more about it now.

PS: I was a little shaken at the time never seen it anywhere we till now.

I just interviewed for a job and could tell they were curious but legally were not allowed to ask. But, hey, they offered me the job!

For me it won't require extra sick days, but I cannot speak for everyone with Nystagmus. Hopefully it works out for you and her, if you hired her.

Interestingly enough, I go to your school and have been in several classes with you (although we haven't talked that much). Two things:

I've constantly wondered -- is it [more] difficult to take tests?

Random note -- I can intentionally shake my eyes, but it's much faster and more symmetrical than what you experience. Edit: Supposedly this is "voluntary Nystagmus." The more you know.

First off, come say hi. I'm quite shy in person but I'm always up to meeting people.

I usually don't have an issue taking exams unless the graphs are off poor quality; however, sitting far back in classes can be a pain for note taking.

What happens when you watch tennis?

It's hard to see the ball in RL and on tv. The Olympics man...I just don't even know...

I can't play tennis at all, btw.

You must be a pretty quick reader.

I am because of my super eyes. And because I have flames on my face. Flames make everything faster.

I don't actually have flames

Not to sound creepy, and all respect to you and your husband. You would also be welcomed in /r/eyes .Just saying it because it's true. (all disclaimers because last time I merely tried to compliment someone, I got downvotes and insults for it and I don't mean anything creepy by saying this.)

I'll check it out, thanks!

I was born with Nystagmus. When I was young, my head would involuntary shake back forth to keep up with my eyes - especially if I was trying to read or write something. Did you have anything similar?

It's way better now that I'm older, people rarely ask my head or eyes shake, but I still get it every once in a while. I always make the optometrist dizzy haha.

I also have really terrible eyes -7.5 and -8.25 prescription. Never tried wearing contacts due to the Nystagmus. Do you wear contacts? How does it work with your Nystagmus?

I wasn't born with the Nystagmus, it is a side effect to a surgery I had to correct my focal point so I hold my head fairly straight.

I have a horrible prescription and still wear contacts. I just have to blink more in order to reset them into the center of my eye.

What about the children?

Will anybody think of the children?

Mine's not as severe as yours, it seems - I just filmed myself, and it looks like I've got roughly half the amplitude.

Do you follow the research on treatment options? My doctor has always told me that mine isn't bad enough to warrant surgery, but I'm hoping that the risk/reward profile will change sufficiently in the future to make it worth pursuing. Currently, from what I've found, there are clinical trials in the US for both a surgical correction and a medicinal option. Neither have posted results yet, though.

I tried a medicinal option about seven years ago as stated elsewhere in the thread but it didn't help. I have been told there is no surgical treatment for my nystagmus because it is the outcome of another surgery.

Its funny I have it as well but could never see how bad it was because when I looked in the mirror they seemed to stay still since they were moving together lol. I have ocular albinism and that is one of the perks of having it.

Yeah, I looked in the mirror and could never see it; that was why I filmed myself. Could you explain what ocular albinism is? I've heard of it before but don't actually know what it is.

TIL, Nystagmus is a condition that can make you look sober when you are drunk (according to OP's husband) and drunk when you are sober, it is not as bad as it looks (pun intended) and than my ass can get sued for asking silly shit in a job interview... oh that you must avoid eye contact with women when they are mad... Thank you reddit.

http://blog.bluezoom.bz/wp-content/uploads/2012/08/The-more-you-know-by-deviantart-StathisNHX1.png

that is no joke the coolest thing i may have seen ever! and your super cute.

Aw thanks! I'm glad you think it's cool, we could be friends in RL.

Gosh, you better get a new mouse! All that jitter!

um, what?

I have a friend with this. As a friend of someone with it, you totally get used to it. It's kinda neat. I really thought it was neat when I noticed this actor has it. It's always interesting to see how Hollywood plays it off when he's doing a role.

Yeah, I've seen him in a couple of things and I like how they always incorporate it, such as in House and in something else where he just flat out tells them, "I have fucking Nystagmus you ass."

Perfect.

My eyeballs do this; sometimes it's accidental, though usually forced.

How does it feel?

I don't feel it at all unless I touch it with my finger.

I worked with a girl that has this. If I had contact with her (I know where she lives but we aren't friends so showing up there would be pretty weird)I'd show her this AMA! it was a little strange at first to be in conversation with her but I eventually got used to it and of course had a short conversation about it where i asked if she could tell, etc... Whenever I see her driving (she lives near me) her head is usually tilted a certain way - just like what you said you had to do. Now I understand why.

Very interesting!

I, too knew someone in school that could "shake" their eyes on command. I figured it out once and then couldn't ever do it again... When you're not supposed to do it it's quite difficult! haha

Great job answering.

Thanks and I love hearing stories about others with Nystagmus because it can be caused by SOOO many things. I find it funny when people tell me, "oh, I can shake my eyes too." Then they get a headache, I don't know, it just seems funny that so many people will make fun of me for it and then these people come up trying to show they can do it too.

Yeah, I can totally understand how that'd be annoying. It's one of those things where the second someone meets you there's instant like...conversational baggage...kind of like someone that talks with a stutter who is actually really smart...I remember a movie about that (it's about a teacher...) but can't remember the name (I even Googled that sh*t and found nothing!. Anyway...it's like an instant hurdle and always on your mind...

Again, Thanks!

Yeah, I have a speech impediment too so I think I throw a lot of people. Which sucks because I almost have a BS, I just want to talk to everyone about science!

out of curiosity, what IS your speech impediment? Something specific?

Yeah, my tongue is rounded instead of pointed and I have difficulty with my Ws and Rs and some words. Overall, if I'm not implementing my speech therapy classes I've been told I sound either British or Australian (I'm American). It doesn't really bother me anymore but my friends find it fun when I mess up a word.

Wow, insta-flashback on 2 years ago when something like this noticed me talking to a girl. I didn't see her much because she was the shy type and thats why i didn't talk about her eyes. we were in a bar or something. Trough the conversation i just kept assuming what was going on with her eyes, an at some point i asumed drugs.

On the way home i could get my mind of her, not for the first 3 days. I realised that whatever she had. It kinda hypnotized me and stayed in my mind. Btw she didnt have it as strong as you have in the video, i guess because she drank alcohol and didnt focussed so proberly.

Anyway, thanks for doing this. Several questions:

Does alcohol easens this out? Doe you have a story about eyecontact with a boy? Is it really like a disease or more like a cool trick? I supposw the girl i know could really help it, but maybe you can really control it?

P.s. Your adorable! Stay happy.

First, thanks for the compliment. That's super sweet. Onto your questions, yeah alcohol levels it out. If I'm tipsy it will slow down and when I'm drunk it completely stops, which makes me dizzy because I'm not used to it.

Story about eye contact with a boy, hmm...I know my husband thinks it's pretty cool, which is super important because while growing up whenever someone upset me at school my dad would tell me not to worry about it because some day I would met a boy who thought it was the coolest thing in the world. Guess dad was right. :)

It's not really a disease nor a cool trick. I was born with a birth defect that through a series of steps I landed with this. I cannot control it and nothing slows it down besides the alcohol, but that's not healthy. I've tried muscle relaxers and some seizure medication but it didn't help.

Your husband finds the eyes cool. He sounds cool. Haha seriously, give him some cred. So thank you husband and thank YOU for answering!

I think he's pretty cool and thank you for the response!

How do your eyes behave when you're trying to sleep? Do they still roll around or are they still?

I never knew about this condition nor have I ever seen it, so thanks for sharing!

Your welcome and I'm not sure. I asked my husband and he said that the only time he's looked he's pretty sure I have been in REM sleep, so who knows.

Does this not make you dizzy? I'd feel like the room was always spinning.

Nah, my brain has rewired itself so that this is normal. If I'm drunk the shaking stops and then I feel dizzy because my brain gets confused. Our brains are amazing!

I can do this on command. Is it bad for my eyes?

It can be because it can stress the muscles and blood vessels of the eyes and could strain them or pop them (the vessels). Mind you, it's different for everyone and if you get headaches from doing it, I would recommend not to do it. However, if you're truly worried, talk to an Optometrist.

I also have Nystagmus. Don't you feel like you're watching a badass sky show when driving on a highway with a bunch of Neon lights at night? I do and enjoy it very much so.

Now the question. Did you have to sit in the front row of all your classes? I seem to have problem finding a focal point when I am looking far ahead (10ft). I was wondering if this was just me or all Nystagmus people.

I really don't know what you're talking about in the first part of that, it's most likely me.

I always sit in the front because I have bad vision but if I'm tired or stressed (hello college, normal state) the nystagmus gets a hell of a lot worse and it can be hard to see. It sucks when I can't get to class early and have to sit in the back. I'm always moving and shifting, sorry people behind me!

When I'm driving at night, all of the neon signs or billboards become lines across the sky. If there are multiple of them, it looks pretty awesome. Maybe I have a vision problem other than nystagmus...

Yeah it sucked super bad for me, and if I couldn't sit in the front of the class, I would just leave. It's good to know there are people like me in the world. Thanks for sharing and I bid you a good year! :)

I've never had that problem with my eyes, but it might depend on how you got your Nystagmus? I don't know, I would check with your Optometrist.

I feel like I have to always go to my classes, especially in my last semester of my senior year.

Hello, thanks for doing this.

How self-conscious are you of this? Any at all? Or does it influence your interaction with other people?

You seem to concentrate hard to make it stop. How hard would you say? I know this is hard to explain, but for instance, can you do other stuff while concentrating? Can you watch tv?

best wishes

I used to be very self conscious of it and refused to look people in the eye. Now, I have reached a state that if it bothers them, then it is their problem and not mine.

I can't make it stop by concentrating or really doing anything besides turning my head to the null point I've mentioned elsewhere in the thread.

I can watch tv and read a book just fine because my brain has rewired itself so that this is normal. However, I have difficulty seeing balls or food when it is being thrown at me because of the speed and the amount of effort it takes my eye, I believe.

Thanks for the questions!

Now, I have reached a state that if it bothers them, then it is their problem and not mine.

That's good to hear.

I have another question, you don't have to answer if you don't want to. What do you think of the people commenting on your looks?

I"m not used to it at all so it's a bit surprising?

Thanks for sharing this - there is an actor who also has this condition link I had not thought of looking up his profile until now but your video prompted me to. He is a great actor btw!

I have seen that people have asked if you get dizzy with this and you don't. Interestingly when I go through bouts of Vertigo (Meniers) I get what the doctor calls 'eye wobble' - it's my eyes trying to adjust to the apparent "off kilterness" of my surroundings. It looks similar to your video and when the vertigo recedes is becomes less prominent.

That would be because your brain is not wired for your eyes to shake since you were born without them moving. Our brains are wonderful instruments that can learn to adapt to almost anything and create new pathways between things in order to overcome obstacles.

It looked like you had some control over it. Do they oscillate like that 100% of the time, or can you kind of slow it down when you need to?

Nope, they always oscillate, I have no control over them.

I've got Nystagmus too. Had it since I was born because I was 3 months premature. I find it rather surprising how common the condition is, especially after reading this thread.

My question to you is this: When you go out in public do people ever make comments? Not even any specific age or place. School, work, the grocery store, etc. I ask because I've had to deal with that myself throughout life (with varied levels of awe or panic), and I wonder if that's as common.

Yeah, although I live in a pretty nice town now so I don't get it as much.

not creepin, but i have watched that vid like 5 times now cuz your laugh is adorable

Thank you, that's nice of you!

Does it affect your balance in any way?

I don't know in all honesty because this is normal for me. I don't have very good balance though.

I see this and all i can think about is: "What if Cyclopes (xmen) had this?"

Also: Fight 100 duck sized horses, or 1 horse sized duck?

1 horse sized duck, the tiny horses could bite your ankles and take you down.

[deleted]

Married, actually.

Holy shit this must be tiring.

Also, you look delicious.

I don't notice it unless I'm wearing my contacts and focusing too long on something, like reading. Or if I'm looking at LEDs.

Also, thanks?