This may be one of the most sensitive topics for people with nystagmus. As you can imagine, anything that affects your vision may affect your ability to operate a vehicle. Let’s talk about driving and nystagmus in general, and then I’ll tell you a little more about my experiences.
Can people with Nystagmus drive?
It depends on three things:
- How extreme the nystagmus is. It may be that a shifty eyed person needs to get a note from their optometrist/ophthalmologist saying that it is safe for them to drive.
- General vision. Many times nystagmus is accompanied by low vision. A person with nystagmus will need to take the same eye exam at the DMV as any other person would do. This test can be taken with glasses on, but that will mean that the driver would need to wear the glasses at all times while driving.
- Where the person lives. It’s my understanding that in the UK, the driving requirements are much stricter than they are here in the US, and it’s much more difficult for people with nystagmus to get a license there. Also, every state in the US has different driving requirements.
Do I Drive?
No, I do not. Can I drive? Technically, yes. In the past I have gotten my permit, and have driven a great deal. However, I have never gotten my license. Just because I can drive does not mean that I am comfortable driving. Because of the way my particular nystagmus reacts to movement, fast glances and checking blind spots are challenging. I’ve been in some close calls before. My worst nightmare is not seeing someone in time, making a movement, and then getting into a huge accident on a freeway that kills somebody.
So, for this reason (and others not having to do with nystagmus) I have chosen not to drive for the moment. This may change someday, especially if I have kids and need to drive them around. But even if I do get my license, I will probably keep driving at a minimum
Does not driving affect my life?
Yes, it does. This is probably the single greatest nystagmus-related challenge for my personal life. I live in Los Angeles, which is probably one of the biggest pro-driving societies in the world. Not driving can be seen as being irresponsible. It also means that the public transportation system is often times lacking. In order to have any kind of personal life, I depend on getting rides from other people. My friends have been great about this, but I know that sometimes it can be frustrating for other people. I try to pitch in for gas if I’m being toted around a lot.
I do have a fantastic boyfriend who is very understanding about my not driving. I won’t lie though; it has come up as an issue. I can imagine how frustrating it is when there is a family event at his house that he has to pick me up and drive me back for. It also affects how much he can drink when we go out, which isn’t fair to him. He is very kind about it, and has let me taken my time with the driving issue. He never complains to me, and for most of the time, it’s not a problem. But I can see that it’s frustrating sometimes. I struggle with a lot of guilt about this.
As far as work goes, luckily, I work just blocks away from my house, so I have avoided the challenge of getting to work for now. Whew!
So yes, driving is an issue all shifty-eyed people have to deal with. It’s a sensitive topic. No body likes to think they can’t do something simply because of the way they were born. We appreciate all the understanding and shifty-eyed love from all the “normal” sighted folks out there 🙂
xoxo
Jo
*** (Hey all, there are updates to my driving journey here and here. It’s good news!) ***
The Shifty Eyes Blog 
Hi Jo,
I like your blog. This post about driving is interesting. I too work just blocks away from my house.
Brian
Hi Brian,
I have nystagmus also, and am wondering what kind of work you do. Working on a computer is very difficult for me. It causes eye strain and headaches. I do drive, but only limited. I don’t drive on major highways or in congested areas (like cities). I live in a small town, and drive locally. I also have a balance issue, so job opportunities are limited. Any advice would be appreciated. Have a great day!
Linda
Hi Jo –
I had my license and was driving for years and years before an eye doc told me most people with nystagmus can’t drive. My null point is to the right of me, so when I drive in the fast lane all the signs and such are to my right and not “moving”. I do try to avoid driving at night though – my vision is much weaker and I’m usually more tired which makes the movement much worse.
Hi,
I also have nystagmus and am curious what kind of work you do. It’s been very difficult finding a job.
Linda
My situation is similar to TMS except my null point is to my left. So much of the time I drive with my head turned to the extreme right. I also have really weak night vision, though twilight is the worst. When I drive at twilight I have to pull my eyes out of focus, as straining them to pick out vehicles on the road makes my eyes move a lot worse. Driving becomes, at times, an adrenaline pumping experience, instead of a monotonous chore. Haha, I’m grateful for that at least.
HI Jo,
thanks a lot for this blog. I started to think about getting a driving licence and couldn´t find anybody with nystagmus, who drive. My plan is to give it a try, though I am scared of low vision on the road. As Adam writes it might be an adrenaline pumping experience 🙂 Also I feel limited in finding a good job, as the driving licence is required at most job positions.
Good luck on getting your license! I image that once you drive more and more it will become less nerve-wracking.
You bring up another good point; it can be limiting in what jobs we get. Any one else have this problem?
I have nystagmus, and i am turning 26 in a few months. I want to be able to drive so badly. so far i’v been acting like there is no way that i’m not geting it. but really im terrifed that i might not because of my vision. 😦
Hey Steph, have you figured out your driving situation? I realize you posted over 5 years ago. You and I are the same age, I haven’t been driving.
Jo:
Thanks for this website. I hav been looking for informaton regarding Nystagmus and found interesting info.
I, too, have it and do not drive…never have. Though I attempted it in my youth, I found driving to be quite the chore.
Though, I desre to drive, even now, I am an aduly, I know how I see the road and th yellow lines, that never stay still, but are cntinually shifting.
Opthamologists will give me a document to take to DMV to get a license, but for me, it is not worh the risk of endangering my life or others, just to be able todrive.
I want to….I desire to, but I rely on publictaqnsportation.
Tanks agian Jo for this blog.
It’s good to hear from other’s who have Nystagmus! I myself have Congenital Nystagmus and I drive! With glasses, my vision is 20/40. However, my brother also has Nystagmus and he cannot drive. My cousin also has it and he can drive. So it’s not impossible to be able to drive when you have Nystagmus. It can however, be an inconvenience when you cannot drive because you’re vision is not good enough. I live in MN and have been trying to research a good doctor who specializes in Nystagmus. I’ve been doing everything I can to see what options people like my brother have to correct their vision enough to have decent vision. Let me know if you guys have any doctor’s in the area you recommend.
Hi Jen and Jo,
I have latent nystagmus. I was born with it and had 2 surgeries when I was young to help at least keep my eyes somewhat aligned. I live in Rochester, MN and many Doctors there have been helpful to me. The one I saw my entire life is retired now though:( Anyway, I rarely drive and it is affecting my life… especially when it comes to work. I do day care at home right now but am not happy with it. I’d like to get out of the house and do something else, but I feel hopeless in so many ways. I especially can’t see at night or in bad weather… or even if it’s just sprinkling, I struggle. I have had a few close calls on the roads… I just can’t put any one else’s life in danger… let alone mine or my daughter’s. It’s hard, but I try to keep a positive attitude… at least I’m not completely paralyzed right?
Sincerely,
Kelly
Jen I too have nystagmus and low vision. i have talked to some low vision specialist about the issue. the only thing that i have found is “bioptic driving”. this is using a telescope mounted on glasses to help see far objects. i am going to try this and see if it works, you should tell your brother to give it a shot as well.
I live in the UK. I have Congenital Nystagmus. When I was first diagnosed I was placed on the UK’s Partially Sighted Register, I am registered Disabled and I am prohibited from holding a driving License. Getting a license is hard for anyone with any visual impairment.
The UK is actually quite good in this respect, I receive a travel allowance from the Government it is quite low but I also get concessionary fares on Public Transport.
I lived in London for 3 years while at University and Transport for London issued me with a Freedom Pass which gave me free travel across all TFL services except the ferry.
I have to live in cities, I can’t live in rural areas, I depend solely on public transport or family when I am with them. The biggest problem from my point of view in the UK is employment, a lot of jobs require people to travel or they are located in major cities which cost a lot to live in and commuting isn’t really an option for me I have to move if I have a job opportunity.
I’m trying to learn how to drive wtih biopic lenses, and it is absolutely terrifying. I hope that eventually I can persevere and acheive this gaol because I have found myself very limited in my job possibilites because of the fact that I cannot drive. I am currently moving toward ordained ministry in my particular Christian tradition, and a member of the leadership is currently trying to convice me to purse the deacon track rather than the elder track because if I become an elder they will be obligated to place me somewhere (whereas placement is voluntary with deacons) and I will be harder to place since I do not drive. And really, other than this, it seems that any remotely promising job ends up having a driving/car requisite which isn’t brought up until the interview.
Hi Jo,
I have congenital nystagmus, and drive with an unrestricted license (just barely made the cut for PA). I’m perfectly comfortable behind the wheel in most situations. I’m usually fine at night, or in bad weather, but when the two are combined it is a bad situation. Otherwise, my only real issue is when it comes to driving somewhere unfamiliar where I need to read road signs. Now that GPS units are so cheap, that’s not really as big an issue anymore, either.
I actually feel as though I am a better driver because I realize how closely I need to pay attention due to my vision. I’m not as distracted while I drive as the general population seems to be (at least in Philly). I’ve been rear ended 3 times now while sitting at a red light, but never been in an accident that was my own fault.
The only other driving related issue is that if you are pulled over for any reason, police officers associate nystagmus with drinking. I was pulled over for speeding, and rather than just leaving it at that, I was given the field sobriety tests, and eventually a breathalyzer as well, even after taking the time to explain my condition. At least after the breathalyzer came out clean, I was only given a warning for the speeding…
Hello Stan,
My name is Travis, I live in the state of NC and I have Nystagmus too… I do have a driver’s license. My vision acuity is 20/80 best corrected. To legally drive in NC your vision cannot be worse than 20/100 best corrected. I am 21 years of age and attend UNCG. My restrictions are driving with contacts, 45mph zone, no interstate and no night time driving! I sometimes drive at night or the highway for a short period of time, because sometimes i dom’t have a choice. I had to jump through rings and climb ladders just to be able to get my license. Without it, life would be hard for me, not being able to travel around. I also sometimes find it hard to read street signs names, but mostly I can read them. While driving at night I notice that my eyes get tired alot faster than the day time. I’ve been driving for two years, but I have to have an eye exam done every 4 years for DMV records. To anyone who is reading this, Driving may seem imnpossible, but with advances with science and technology, just maybe someday, driving restrictions won’t be a factor for us… I thank God everyday for blessing me with the ability to see well…
As I read the comment that I wrote years ago to Stan (see comment above). I would like to take a moment to thank God for all of his blessings. Today I was able to renew my driving license for the next 8 years 9(til 2025). I count this as a blessing because my vision actually has improved over the years according to my amazing eye doctor. My vision acuity scored 20/60 best corrected with my new prescription lenses. I still have all of the same restrictions on my NC drivers license, but I am thankful thatI can continue to live an independent lifestyle.
I remember when I was younger (i’m 26 years of age) and there would be people that told me that I’d never be able to drive. Looking back on it, how wrong they were about me makes me fell a certain type of way. I can see, I can drive and I just recently bought a brand new 2017 Honda Accord EX as a graduation gift to myself.
For those of you out there with Nystagmus and who want to drive, please know that it is very possible. I am living proof of it. You can see, you just see it differently than others, Never take that for granted. Driving is a privilege, not a right!
Be blessed!
Yes, you said it, it is a privilege. I was told, too I’d never be able to drive. No dr let me. Then, I had my eye muscle surgery w/Dr. Hertle & now I renewed for the first time, for 8 years as well. What is your experience w/the DMV? Mine was horrible & didn’t need to. E & a VIP actually apologized to me for them causing me unnecessary anguish.
Hello my name is Tiffany, and I must say that your blog makes feel good about myself, knowing there are other people out there like me! Sure i would love to drive but i’m just not confortable knowing my condition. Thank God i do have a good support system, but at times i am very hard on myself, but again reading your blog made me smile.
Thanks
TIFFANY
Hi Jo,
I am a board member with The American Nystagmus Network (ANN). Could we talk? I’d like to set up some time to discuss ANN with you and network a bit. I look forward to hearing back from you.
Best,
Tricia Cranmer
Hi,
My son has congenital nystagmus. I dont know how he acquired it. I was taking zoloft when I was pregnant with him the doctor said that the babies have trouble adjusting from water to air. When he was born he had trouble breathing and had to go in an oxygen helmet. We didnt notice his nystagmus until he was 3 months old. I have read studies that said women taking zoloft their babies were born with nystagmus but it went away after a few hours. I dont know if the zoloft did it or if lack of oxygen had something to do with it. I am thinking it could have been the lack of oxygen. I dont know I just feel bad about it Im afraid when he gets older he will be picked on in school. Can you email me back telling me what you think? I would really appreciate it.
Thank You,
Diane
To everyone with this problem I feel for you. Luckily I don’t have this condition. Only times I have vision problems is when I get migraines & when my vision starts blurring it isn’t safe for me to drive. But if you are capable of passing the driving test & eye portion part of the test then drive. One thing you could think of doing is like when my father taught me we went into cow field my grandpa had & my dad let me practice driving there. Afterfeeling comfortable there we went out of town towards backroads to practice at old boat dock. Maybe to people not sure about they eyes & driving could try what my dad did with me. Go places were you can practice & no one can get hurt! Plus it is still to this day some of my fondest memories of my dad him teaching me how to drive. In about 2&1/2 years ill be doing this with my daughter teaching her how to drive. Hopefully it will mean as much to her as it does me. But if you want to drive don’t just give up find someone to try to teach you if possible. I couldn’t imagine not being able to drive places. But you do have to make sure you do it safely for you & other motorists. Well to all with the problems good luck & God bless you all. Hopefully this might help some people. I hope it does. It got me good quality time with my father before I lost the oppertunity to have more memories!
Hi Everyone,
I live in Belgium and I was born almost 3 months too early, for that reason I have Nystagmus. I did surgery, the moved my eye muscles a little bit. I passed the eye test on my driving license, however I feel very uncomfortable when driving at night. When I don’t have to, I don’t drive at night, it’s just too dangerous! Driving at daylight is normally no problem, I have troubles reading the road signs from a distance, but with an adjusted speed and looking good around, it works! I work a whole day with the computer and i’m scared my eyes will get worse because of looking at a screen whole day… Does anyone has experience with this? Can your eyes get worse due to computer screen work?
Hi Dieter,
i am from Brazil and I have same problem like yours ( was born with nystagmus). I do have a driver´s licence since I was 18, and before 24 I didnt mind to drive at night. Nevertheless after that I no longer feel comfortable driving at night or at that days nystagmus is “stronger” — I know you understand what i mean. Now I´m 32 and since the last 8 years I am working full time in front of the computer. I am not sure yet if the computer screen is the cause, but my eyes got worse, specially in the last 1 and a half year.
Hi, my name is Rick, I’m a 56 year male, and I’ll never get rid of the self-comciouosness that comes with CN. Of course it was worse as I was younger, and we all know how rotten children can be if you’re a little different.
Ironically, I work for the state of NJ as a case worker whose job it is to investigate the abuse and neglect of children. I was called into the manager’s office. We were discussing a case when out of nowhere, she asked me what was wrong with my eyes. Of course, it had been years since anyone had openly questioned me about my eyes. I told her what it is called. She immediately turned to her computer and looked it up. I understand that she has a right to know who is working for her. I also understand thet it is common for the police to look for nystagmus as part of a roadside field sobriety test as people who are drunk develop Horizontal Gaze Nystagmus.
Althogh it is a medical condition, and none of her business, I called my ophthamologist who faxed me documentation that I have been a patient since 1970, I have a condition called CN which is permanant with no cure. I made a copy for myself, and gave a copy to the manager. I never heard another word about it. She didn’t realize it at the time, but I had already told my supervizor about the subject. I did so because I just wanted to cover myself in the sense that the CN wasn’t self-induced by alcohol, or I damaged my brain by smoking crack or something similar.
If she was white, she would come under the heading of white trash, who possessed no social skill whatsoever. This is a Social Worker.
I’m just venting, but I’ve been dealing with this shit for 50 years, Yes, it could be worse, I drive, have a good job. There have been different phases in my life when I took drugs in attempt to emotionally distance myself from this rotten hand Iv’e been dealt.
I receive no relief knowing that I’m not crippled, or have cancer. That works for only so long.
Being 56, maybe I’ll get another 20 years. Although it has made me sensitive to other people’s needs, and probably has something to do with having become a professional musician, going to college, and my job protecting children, one can only go so far with the knowledge that it could have been worse.
Like I said, just wanted to vent – thanks for listening.
I have CN, and have been driving a long time. I live in Jersey and squeaked past the vision test. Also, everybody in Jersey is in a hurry and sggressive. They’re not gpoing anywhere special, they just want to get there fast. That’s their problem. What I’ve learned over time, is to know your limitations. In my case, the worst case scenerio is driving at night during the rain. For one thing it is difficult to distinguish between what is actually there, and what is a reflection from the rain. If I can, I’ll avoid driving under these conditions. If I can’t, I’ll take it slow. If there’s someone behind me who wants to go faster, my attitude is, go around me – friggem
Hi everyone!
I also have Nystagmus. It makes me feel better to know there are people like me. I’m 19 and really wanting to get my license. The only problem is that I’m scared to drive because of my condition. Any advice?
Danielle 🙂
Hi,
I wrote my suggestions down here 🙂
Hi Danielle,
I should suggest you go to your eye doctor first and discuss whether it’s possible for you to get your driving license. I’m now 25 years old and I got my driving license at the age of 18. My eye doctor said it wouldn’t be a problem for me to drive a car and if I didn’t pass the eye test at the exam, he could still give a poitive advise, although with some limitations to my driving license. I passed the eye test because they showed several “E’s”, one normal E, one upside down,.. You had to tell in which directions the “legs” pointed.
Altough I got my driving license in a normal way, I still realize I have some limitations, driving at night in an unknown area, driving at night in the rain is a nightmare… Also when I’m with friends in the car, I notice they see things from a lot further than I do. I don’t drive too fast, put my both hands on the wheel and look good around!
So I suggest you go to your eye doctor first and have a little discussion with him. Also ask him which kind of glasses are the best, when nystagmus, you can’t wear any type of glasses!
Good luck !
Thanks Dieter 🙂
I most deff will ask the doctor. Is it hard for you to drive?
Hard to drive, at daylight no, I drive a normal car with manual gears. Just I can’t read the road signs from a long distance… At night I feel a little uncomfortable, so when I can avoid driving at night, I will! Certainly when it’s in an “unknown” area!
Hey all,
I am 24 yrs old and have nystagmus. Driving is a really big deal for me and am going to the eye doctor to see what my verdict is. I was tested in 2005 and barely passed the test. I had my permit for 1 year and was ready to go, but as I was driving I noted all the problems that there were or could be. I decided to wait it out and my parents agreed. Now, my eyes do not move nearly as fast as they did and I know when to say, “my eye’s are bad today I can’t drive”. I have my good days and my bad days. Driving is such a big deal though because of jobs, social, and independence. I understand what everyone is saying about their concerns with driving but I believe that it can be done.
Does anyone know of any treatments, surgeries, or anything that helps nystagmus?
Chad
Hi,
At today, they are no real treatments who can cure Nystagmus for a 100%, altough they can move the “eye muscles” a bit so the Nystagmus declines. Notice that people who have Nysagmus keep their head a little bit “slope” because than the movements are returned to a minimum. They moved my muscles when I was 2 years old so I could keep my head straight. Normally when you get older, the movements most of the time reduce a bit…
Nothing to do with the Nystagmus, but wit tired eyes in general: Visio Max, it’s a product on natural basis and some say your eyes don’t get tired so fast. I don’t know if it works, it also has nothing to do with the Nystagmus (it won’t cure or reduce the movements…) but I work on a pc all day and if I take 2 pills a day my eyes don’t feel as tired if I don’t take Visio Max.
It’s just a tip!
Grts
I am 38 and have CN. I am able to drive, but I too work on a PC all day. I frequently get headaches if I don’t take breaks during the day. Was wondering if anyone had any suggestions to prevent the headaches? I was reading some information about Magnesium or Thiamine deficiency? Also there are some studies regaridng the drug gabapentin???
I am 50 years old and have had numerous fights to drive. I have driven for many years and every time it comes time to renew my license it is a heartache. People never understand nystagmus and I have two children with it also. Have gone to University of Minnesota for many years and do get a doctor to sign for me to obtain a license. I refuse to have my kids go through all the things with nystagmus that I did, but generations later we are still there. “wear your glasses.” Like that makes it all better. Why are doctors and researchers not doing more to help us? The nystagmus network always talks about that has been so helpful. The doctors and the University of Minnesota say he is doing no more for people than what they can do. I am ready to see about that.
Hi Ellen,
I think it is because only a very few people have it and it’s not life threatening, so they don’t do to many research about it… You have to renew your license in the US ? In Belgium it’s permanently, you only have to pass the eye test when you want to get your driving license, you have to see 50% with both eyes together… If you don’t pass the test, the eye doctor can give a paper where he gives positive advice… What have they done with you? They moved my eye muscles when I was very little so I would keep my head straight and afterwords they gave me glasses and have to go to the eye doctor every years… That’s it, there are things moving, but it will maybe be 2020 untill something really gets done!
I would love to read more of the comments, but after awhile watchimg the words move up and down, (trying to focus on the line I’m reading) strains my eyes. Having nystagmus makes the world a moving target. I do drive, in a limited capacity. I worked as a florist until a couple years ago. My position was eliminated due to the poor economy, and I haven’t been able to find another job. So many jobs require a lot of computer time, and that isn’t possible with my impaired vision. If anyone has any news about new, effective treatment for nystagmus, please let me know.
I’m seriously considering going to a better doctor here soon. 22 years old and for as long as I can remember I’ve had these jerking eye movements. I’ve gone to optometrists before thinking I have bad vision causing eye strain, but they claim I have 20/20 “with a slight astigmatism”. People have actually gotten mad at me because they think I’m rolling my eyes at them. After taking video of myself tonight, I could see why. I always thought my eye lids closed when I did it. It’s a definite streak completely across my eyes to the top left and occasionally to the right. Never even knew it went to the right. It makes my eyes terribly tired and sore, but I have no control of it. Sometimes it affects me when I drive, but not really. I have considered pulling over because of it once or twice though. I drive 12 miles one way to work and in college I drove 45 miles one way. It’s definitely a fear, though, that it’ll start happening and I won’t see a car because of it.
Hi, I too have nystagmus, for over 10 years I was told I would never be able to drive, until last year when i had an eye appointment and was told I am borderline driving standards, to say the least I was over the moon at last a glimmer of hope driving would mean everything to me and my girls, from what I have read the UK seem alot stricter on there driving requirments so I’m pleased they are proposing to drop the number plate test from 20.5m to 17.5m as soon as this has been approved I will be applying ..
Re: Does not driving affect my life?
Fact is that most cars can carry four or five people, so getting at least wo peolpe in each car is a good thing. So here’s a question for driver’s with Nystagmus, do you take any passengers and if so under what conditions, would you seriously consider driving a minivan if you were the only occupant with Nystagmus and everyone els aboard had normal vision?
I also recommend looking at the Grey means go blog. If driving is a problem for you, can you suggest any changes to road rule signs or makings that wolud make it easier?
I was aslo told by an eye doctor that i wont be able to drive..am i driving now? No, but i would love to because me not driving means i have to depend on other peolple and that frustrates me because i am independent…..I was born with this condition and having it as a child wasn’t fun at all i got teased and bullied a lot during Elem-High School… I got into a lot of fights because of it as well.
Hi, my name is Dave and live in Texas. I’m 54 and have been driving since i was
18. Aside from being teased early on, I’ve lived a fairly normal life. I’ve been lucky enough to find doctors that have passed me on driving eye exams so that has not ever been a problem. My nystagmus started at birth. Married to a great woman and two great kids, boy and girl. My null point is to the right. I was amazed that I could never see my own eye movement when looking into a mirror. My head moves back and forth as well as my eyes, if that mean anything. Today i was outside talking to my son about nystagmus and he told me there were times my eyes didn’t move. With a bit of experimentation we discovered that if I relax and slightly cross my eyes, they stop. I don’t know what this means exactly but I’m stunned that I can stop them in that manner. Has anyone ele out there tried this. Heck after 54 years of eye movement, to have someone tell me they don’t move when they are crossed was incredible news to me.
Hi,
I stumbled across your blog because I have acquired nystagmus it happened after surgery and I am really struggling right now with having always been so independent and now not being able to drive. I often feel trapped as we live in a smaller city on the east cost and nothing is really in walking distance.
im 15 and have nystagmus with albanism and failed my vision test i dont know what the driving requirements are in the state of ohio but i got 20 70 vision but i still failed my vision is not bad but i am wondering if i need a drs note to pass my dr told me i shouldnt have a problem getting my permit but i did any comments would be appreciated. Thanks -jeremy miller
I feel your pain. I went in to get my permit and I totally failed. I hate thoose boxes that you have to stare into! I always fail them even when I am wearing my glasses. I feel like it is really hard to find a good prescription for my glasses. I want to drive so bad!!!!!!!!!!!!!! I also feel like when I am nervous that my eyesight is affected. I hope I can find a eye docter to sign the form so I can drive unrestricted.
hi guys
i am an optometrist from India and planning to do a research in University of Queensland Australia on the topic vision and driving difficulty faced by nystagmus people. i need your feedback on the same and your experiences. i hope the research will prove to be beneficial to everybody dealing with nystagmus and will help to find the new ways to encounter the visual and driving difficulties.
hope you all like the research topic and give your fruitful suggestions.
you can also mail me at optomneeraj@gmail.com
I, too, have a nystagmus.
I can’t drive, either. I had my permit for almost a year but rarely used it. I am very uncomfortable behind the wheel. My null point is to my right and it makes looking to the left, changing lanes, and checking blind spots very hard.
People don’t seem to understand that I would drive if I could. Truth is; the thought of killing someone is much more overpowering than the need to drive, for me.
HI, everyone. I am Kristina. I currently live in Vegas & am 40. I haven’t been able to drive, either. I encourage everyone with nystagmus to see Dr. Hertle. I had the surgery back in March of this year. I didn’t even know it exited or Dr. Hertle for that matter. I only found it by flitting around on the internet.
I want to thank all of you for sharing your experiences in dealing with nystagmus. I was born with nystagmus. When I was 19, I attempted to get my drivers permit and was turned away from the DMV for not passing the eye test. I gave up, I felt that no one gave my any advice or suggestions on how to get my license. Well three years ago, at 32 years old, I decided to try again but this time I was successful. I asked for help from my optometrist and from the DMV. I am up to renew my license soon so wish me luck. The point of my story is to ask for help.
I have CN and really want to drive. I’ve still got a year but after hearing and reading about other people who have it, I’m worried that I won’t be able. I find it hard to concentrate and my null point is my left. If I was able to drive I’d be very worried about my safety and others around me. Any advice?
Alicia x
I am so glad I found this blog. It’s great to find other people going through what I am. I am 28 and have congenital nystagmus. I was always told growing up that I couldn’t get my license, but my parents also didn’t get me glass or anything I was pretty much blind. A couple years ago I found an amazing doctor he got me seeing 20/30 and told me I could get my license, but not to take the vision at the dmv that he would write me a note. Well I am a pretty good driving but it does scare me to drive especially since I have 3 kids. I was recently in a car accident and I feel like my vision is getting worse, not sure if it’s cause of the medication or what not. But again thank you so much for this blog alot of people don’t understand and think I am just being lazy. Which is not the case I want to drive, but I don’t want to put anyone in danger.
Hi everybody
I was a technician before getting this condition, the place– is vermont. please bear with me on my typing it is poor. I will try to be concise and to the point. It has been a struggle getting my drivers license, the particular thing that I want to get across to everybody is that there is still hope! like what DAVID had to say about finding the null spot(that is the place where you have no nystagmus), then look slightly cross side to get it to stop.If you keep exercising your eyes in this way it will eventuitley go away.
bob
Hi all, i am writing from the UK. I am 30 year old female with congenital nystagmus. I have been driving for nearly 8 years ( longer if you include learning). I have no idea how ‘bad’ my nystagmus is or what my vision is – I didn’t even know I had nystagmus until a few months back! I do wear glasses as I am short sighted which I have declared to the DVLA but that’s all. I believe I am a responsible driver, never been involved in an accident & I am completely comfortable at the wheel. If I find my eyes start to flick, I just jerk my head up a few times which seems to help, on the rare occasions this doesn’t, I pull over and just close my eyes for a few mins. When I feel calmer I just continue as normal. I have never felt comfortable on the motorway not because of the nystagmus just because so I don’t do motorway driving. If I am tired I just don’t drive! I know my limits & abide by them. I never declared my nystagmus to DVLA as apart from not being aware of it, I didn’t realise I had to! Now I have hear that it is law and am reading about other nystagmus drivers or rather lack of and am petrified my licence will get taken away. I have booked in the opticians for tomorrow and docs on Monday so hopefully I will have something positive to produce to the DVLA but I am concerned with all the negative comments regarding how strict the UK is and how so few ppl drive etc, I am starting to stress about the eye tests and I know stressing induces the flicking – & I am so worried it won’t be good enough to allow me to drive – I would rather re take my driving test! is there anyone that can offer advice? Or some hope? Thanks!
Hi Mel, I hope you still have your driving licence and that the DVLA haven’t revoked it. My son (now 33) has nystagmus and has never managed to get his licence, despite being able to drive perfectly well. He can pass all of the optician’s eye tests and all the DVLA ones but whenever he went to take a driving test he would fail to read the number plate correctly – always got one letter or number wrong – and that was enough for them to cancel the test. He’s now been offered tenotomy surgery by our local eye hospital (Southampton) and he’s going to take them up on their offer. Whether this will correct his nystagmus enough for him to read a number plate remains to be seen. I’ll let you know!
Hi Christine,
My name is Udit and due to congenital Nyatagmus I had undergone this surgery in the US.
Even though people may get different results but this surgery is not primarily to improve the eyesight.. rather it’s to reduce the involuntary eye movement which may, I repeat may improve the vision but it’s not a guarantee. Plus I had this surgery in May 2015 and till date I’m still having its side effects. 2015 was the most hellish year due to the side effects. However, it’s me and your son may get all together different results. My vision has marginally improved but not what I expected but again your son may be a different case. In case you want to know more then you can email me at udit.2026@gmail.com. Please note that my objective is not thttp://ocumetics.como discourage you but provide you my personal experience. Also if your aim is to improve the eyesight then tell your son to do eye yoga. Further a new technology has been developed with can improve the vision drearicalky. It’s called bionic lens and these have been developed in Canada.
All the very best!!
Udit
Hii! I’m 17 and I too have congenital nystagmus 😓. It’s extremely difficult for me and has not improved over the years, everyday proves to be a challenge. As you may suspect I ,like many eager teens, am extremely anxious to get my license and feel a little more independent, I’m just soooooo petrified to drive because of the fact that i can barely see.
Hi Jo,
thanks for the blog about nystagmus and driving. I am fifteen at the moment and just months away from driving. I’m really paranoid and scared about driving and possibly hurting others as this nystagmus affects my eyesight and overall awareness. Thanks for the reassurance that people with this CAN drive and sometimes choose not to.
Thanks heaps,
Josh
Hi,
I really appreciated you sharing this. Im going to rant a little, so i apologize in advance, I live in a suburban area and have nystagmus and low vision so I can’t drive. I always feel so guilty asking for rides and my parents act like its this huge burden when I have appointments I need a ride to. It also drives me crazy that it takes 15 mins to get somewhere driving and an hour on public transit. I have a part time job and my parents want me to get another one. I know my vision makes it harder to find a job I can get to w/I driving and I physically can’t fit as much into a day because my transportation time is so much greater than everyone else. I am looking to move to a place where people take public transit, but I really dislike cities. So it’s a problem. Anyway, thanks for sharing. It’s nice to know there are other people out there in similar situations.
Hi, I have a slight acquired nystagmus after inner ear damage and I am very new to this. If I look to my far left or right you can see the nystagmus otherwise in my central vision you can not see it, but I can through my eyes. I am having the most problem with driving. Cars moving seem to cause this for me and they wiggle in my vision…. Do you get this too?
I have nystagmus and am 41 years old. I will be taking my bi-annual driving and eye tests soon and worry I will not pass, even with a doctors note. But, I did want to let people know that I was always prescribed glasses until my current doctor prescribed a certain contact lens that is hard in the middle and soft around the outer edge. It helps control my eye movements way better than glasses ever did. I recommend asking about them at least. Be prepared for a hefty price. My doctor manages to get them mostly covered as medically necessary.
Hi Cindy! thanks for sharing your experience. I am very interested to learn more about these special contact lens. I am in Brazil and even I tried so many different doctors, so far I couldnt find the one able to help me. If you could share brand/name of the contact lens, I might be able to ask straight about this specific one. Would be happy to hearing from you soon.
Hey guys! Just wanted to let you know that I posted an update to my driving status if you want to check it out. Hope you all are doing well!
In many countries such as the U.S., Canada, Australia, neitherlands, it possible to drive with the help of biopics telescope under certain conditions. Please check this out as it be very very usefulf for people with nystagmus or low vision.
Pleas feel free to reply.
Thanks
Hi! I have an 8 year old with nystagmus, since birth, and I find your blog very interesting and helpful. I was wondering if you or any of your followers have any information, good or bad, in regards to Dr. Robert Lingua and his new procedure he is doing to correct It by removing part of the muscle? I don’t see anything on any other blogs and if this works I’m wondering why there’s not more information.
Thanks,
Kanji Adams
Hiiiii kanji 🙂 I myself had the surgery that you are referring to last year when I was 18 and I have to say that I haven’t noticed any improvements visually but the nystagmus itself has slowed down slightly. I would however recommend that you allow your son to get the surgery because of his age his body willl be able to adjust better. I hope that this helped you a little
Thanks for responding! I’m going to try and get an appointment scheduled today and find out some more information. Have you had previous surgeries?
Hi,
I recently went to see my optometrist. And he noticed by eyes were moving, he told me that I have nystagmus. I was never born with it. I am really nervous with everyone stories. However, he told me to see my Dr. and have him referred me to see an ENT. My optometrist said that it can be cause of a virus, which obviously a virus cannot be cured. I also had been driving for many years. So this nystagmus is very new to me. I had my last eye exam in November of 2014 an I have nastagmus problems why all of a sudden it just came out. I am a little nervous because I do need to drive to go to work. Can anyone help with any suggestions or advice? Please help!!!
Thank you,
Jacob Som
Reblogged this on Wibbly Wobbly Eyes and commented:
Exactly how I feel 🚗