• Teenagers: Careers, Driving, .....????? June 14 - 06:56 pm
• Dating, restaurants, sports, shopping, traveling. June 9 - 12:13 am
• A meeting place for Teens with Nystagmus May 12 - 05:55 pm
• Local get togethers. (MN, FL, TX, NY,.......) April 4 - 07:04 pm
• How do we interact with the normal vision world? June 14 - 07:58 pm
• Adaptive methods we use at work or school. March 3 - 02:26 pm
• Hiding our visual impairment (Is it good or bad?). June 16 - 08:31 am
• People that don't know about our vision ( or ignore our limitations) August 5 - 07:30 pm
• Requirements for an highschool student interested in going to med. school April 15 - 06:07 pm
• College struggles April 9 - 09:18 am
• Hard Contacts? or Some that are heavy? April 23 - 12:39 am
• Recognizing people April 7 - 09:01 am
• Involuntary eye movemnet September 18 - 09:18 am
• ADHD & subtle eye tracking challenges October 2 - 08:41 pm
• Nystagmus and Asperger's Syndrome June 7 - 10:59 am

I have congenital nystagmus. Nobody: even my mom
seems to take me seriously. My problem relates to work and school. I live in Alabama, USA. I would like to speak with someone with this condition. Please contact me at (205) 933-2870. Call collect.
Reggie

My name is Gwen and I live in New Orleans La. I am searching for an eye doctor who specializes in congenital nystagmus for adults. Please e mail me at vmichon@earthlink.net
Please help me, I'm affraid I'll have to give up my 17 year career as a Paramedic.

Hi, my name is Marco. I am a 25 yr old male from New Jersey, and have lived with CN my entire life. Needless to say, This condition has effected my life in every aspect. Although I have met many people who are visualy impaired, I have never interacted with anyone who has CN. I was surprised when I came across this website, and I decided to post a message just for the heck of it. I just want to offer my advice to parents who may have questions, or to anyone in general, for whatever it is worth. I understand the hardships of living with such a condition, and am open to discussing it with anyone who might be interested. Feel free to e-mail me with any questions, comments, or new info you may have...or even just to chat. Thanks for taking the time to read this. And please stay positive and remember that although you cannot control Nystagmus, you can control how you respond to it....Peace

I am verry confused. My eye doc says I have nystagmus(which I believe I do), but what I see looks nothing like whats on those web sites posted, and nobody can actually see my eyes moving at all. I dont what it looks like for anyone else, but for me, images to not jump or move, I just see certain things blurry, especially light. on light bulbs and things I will see a long streak of light usually pointing down from the light. Also I have found out that if I put my finger real close to my eye and look at something while it appears to be right next to my finger, the image is sharp and there are no streaks of light. I am very confused to say the least. I would like any information or somewhere I can get some information. thanks

ray...

if you have CONGENITAL nystagmus, images generally do not "jump & move" like what those web-pages show for ACQUIRED nystagmus. When you get nystagmus at a young age, your brain learns to adapt to the constantly moving pictures & you "percieve" it as stable.

Some people only have a type of nystagmus (manifest latent? I think...) that only occurs when they are looking in a certain direction....& with nystagmus your eyes might not be like completely roving all around the room. they might just be jerking in very small arcs...so from a distance it would look like your eyes are stable.

About blurriness..do you wear corrective lenses or glasses? Bluriness is generally something that can be improved with glasses or lenses.

I think its kind of normal to see a streak of light coming from a light..I do--of course I don't have normal vision or normal eyes.

Putting your finger close to your eye may be a way for you to control your nystagmus...like a null zone. People with CN sometimes see better with contacts on than with glasses b/c the contact lens ON the eye is like a stimulus/sensation to the brain that helps slow down nystagmus (not stop or cure it, but maybe help some people)

I'm not an opthalmologist or any kind of expert...the best source of info would be your own doctor. just ask him/her to be more specific about your eye problems the next time you're there. If they don't answer your questions the way you want to, maybe you should try to get a 2nd opinion/information from another MD.

Hello, my name is Betty Banks and i am a nystagmus survivor,i had nysagmus for (35)years and i have adapted to this eye condition ,and i have vertigo along with it but i carry on with my every day life i have, side nystagmus and horizontal but lately i have been noticing frontal nystagmus, so i do what i can i am also a sign language interpreter and sometimes it may be a little difficult to read signlanguage but that is fine i do what i do and very good at it

Hello, my name is Pam Denham and I have a 17 year old daughter who has congenital nystagmus. Katie was first diagnose at 6 months and was virtually blind for the first two years of her life. The main problem right now is she is way pass due for an eye exam. But, the last specialist we saw no longer takes anyone over the age of 12. So if anyone knows of an adult opthamolgist in the Dallas/Ft.Worth Tx. area, please e-mail me at pdenham1964@yahoo.com Thanks.

I have CN but it is not too bad (compared to another person I've met who has it). I am not very limited in what I can do. I just wondered if anyone else has this problem: several times I have been in car accidents (either as a passenger or as the driver of one of the vehicles) and I get GRILLED over and over with the questions, "Are you on drugs? What kind of drugs are you on? Are you drunk? What have you been drinking?". Finally one day I searched on the web and found a site that said mild nystagmus is a sign cops and paramedics look for to see if someone is on drugs or has been drinking! It really, really annoys me because I've had an officer not believe my story (he only believed me after a witness completely corroborated my story) because he seemed to think I was lying about not being on drugs! I have also forgotten to notify the nurses that I have nystagmus when I visit my doctor (there is always a new nurse!) and get the same treatment. I feel like wearing a big sign that says, "I have nystagmus! And I was born with it!". Inevitably, when I tell a cop, EMT, or nurse that I have nystagmus, their next question is, "How long have you had it?" Arrrrrgggghhhh!

Anyway, I just wondered if these things happen to others. I am considering carrying a medical card in my purse that says I have CN so that if I am ever unable to tell someone, at least they'll hopefully look in my purse and find out.

I've got CN and microphthalmia too so I not only get accused of being on drugs and/or drinking but, thanks to the microphthalmia, I get accused of indulging in a little "mexican agriculture" if you know what I mean. That one has been happening since junior high and by just about anyone.
I can totally relate to the above post. I've only been a passenger a few times when the driver has been pulled over but every time, I'm the first thing the cop notices if I wasn't wearing sunglasses. Apparently, they *never* mention to cops when they're being trained that some people actually have nystagmus due to reasons other than getting loaded. You would think maybe they could mention that but they probably never will.
Getting a medical card probably wouldn't be a bad idea. If it ever happens to me again, maybe I'll just play along with the cop's accusations and let myself get arrested. Then I can come back and sue the hell out of the cop. I can always use some more money what with this crappy economy.

Please don't sue us. I'm a police officer and I as well have CN since birth. Trust me, I have had the same problems as you before I was an officer.

There is a school where we learn how to identify intoxicated people and its called Standardized Field Sobriety Testing. In it, there is a test called a HGN test (Horizontal Gaze Nystagmus). The more intoxicated a person is, the more distinct they're nystagmus becomes. And, YES, we are told that there are people with natural nystagmus (like myself and you) but it is such a small percentage that it's very rare to run into one. As an officer I can tell you that it would be hard to tell someone that has it naturally and here is why.

Take for instance a very bad alcoholic who has been at it for years. Sometimes the ONLY indicator you can get from them that they are intoxicated is the nystagmus. They have developed such a tolerance for alcohol that is rarely impairs they're other gross motor functions.

The best way to get across your problem when confronted by an officer is to remain calm, dont get an attitude, and please be patient with him. He has a lot going on in his mind and it takes some time and some repitition to get it across sometimes so please be understand to the officer like you want him to be to you.

Thanks and I hope this helps

Jake Cook
Texas
Email me if you want to talk!

Nov. 3, 2003

Hi, everyone who reads this message. I am a 35 year old female with Congital Nystagmus. I found this sight quite by accident. I have been living with many problems over the years. I'm just now beginning to understand that my vision affects everything I do. From getting a decent job to raising my children. The statement before mine said something about a police office with nystagmus, I find that really hard to believe because I couln't even qualify for military service.
I worked previously as a Medical Clerk, working with a lot of printed materials and a 21 inche monitor and still found my work to be challenging.
I do not wear glasses.

I would really like to hear from someone with congital nystagmus.
Tyra 720-216-0289

Tyra:

A 21 inch monitor? Have you ever considered that Nystagmus may not be the only source of your visual impairment?

People with Nystagmus alone can have vision approaching 20/20 in some cases. You, on the other hand, sound like you're more than legally blind.