My Congenital Nystagmus and Astigmatism
-Sorry about the reflection of the camera in my lenses. Feel free to comment or ask questions. Song playing is Bloods on Fire by Pinback
Tags: Astigmatism, Congenital, Eye, Eyes, Eyesight, Horizontal, Nystagmus, Pinback, Poor, Shaking, Shaky, Vision
January 22nd, 2009 at 6:32 pm
My 4 yr. old son was born with nystagmus and his sense of hearing and memory are SO good. He started reading at age 3 and I somehow attribute his “smartness” to his nystagmus. SInce he’s only 4 he can’t really describe what he sees. SInce you are older, I was hoping you could give me some insight as to what someone with nystagmus sees. I was surprised he could read since his doctor said he has poor vision and a stigmatism. He compensates well. Can people w/ nystagmus drive?
January 22nd, 2009 at 6:40 pm
hi i have nystag as well and am having driving lessons with no problems but am dreading reading the number plate before the practical how did you get through it
January 23rd, 2009 at 12:12 pm
Hello karmilovich, you have some excellent questions. I also have superior hearing that I believe is due to my vision/nystagmus. When I was growing up reading was very frustrating for me; I would get headaches after long periods of time. Looking at things to my left (without turning my head) shake like crazy. Things straight ahead still appear to be wiggling. Looking at things slightly to the right is the only way I am able focus. I could drive but I hate driving, b/c of the nystagmus.
February 1st, 2009 at 7:58 am
hey pinback! i love this band!
February 13th, 2009 at 6:33 am
I have Congenital Nystagmus and after acupuncture, vision went from 20/50 to 20/30, movement went from 11mm to 3mm not noticeable. Also NeuroFeedback works well but it takes 20 or so sessions and is expensive (I have spoken to a few NF docs that has eliminated their patients Nystagmus using NF. I tried the surgery when I was 21 and it didnt do anything apart from probably cause a load of scar tissue! Message me if you want any info on these 2 treatments. Sharon (UK native now in Canada).
February 23rd, 2009 at 1:13 am
Ahh, I fucking hate Nystagmus. I have it too. It bothers me that there isn’t really a cure for it and I think most people would view it as a cosmetic thing anyway, but they don’t know the emotional problems that come with it, which I believe are worse than the physical ones.
March 1st, 2009 at 7:50 pm
does having that hurt ur eyes since they’re always moving?
March 1st, 2009 at 8:58 pm
I have nystagmus too. One thing that I had to learn was to stay calm, because when I get angry/freaked/scared it goes crazy and my vision gets worse, which makes things worse. I suggest learning meditation… It helped me.
March 1st, 2009 at 8:59 pm
It depends on the person, for me it makes my vision worse.
March 1st, 2009 at 9:01 pm
Same here. But I had to get a waver for my vision test.
March 2nd, 2009 at 10:36 am
No, it doesn’t hurt. I get headaches more often though.
March 2nd, 2009 at 12:13 pm
I can describe what your son is seeing. When you spin in circles and get dizzy, your eyes shake the same way. If you turn your head a certain way, you’ll see better. I have nystagmus and i drive but it’s difficult to drive at night and in unfamiliar places. College and job interviews are tremendously difficult. Also, my parents were cruel to me. I started making C’s in college because i didn’t want to do class presentations and they didn’t understand Nystagmus causes major anxiety sometimes.
March 2nd, 2009 at 12:22 pm
That comment was intended for karmilovich by the way. One time I was going to the movies with a friend and we got pulled over for speeding. The cops frisked us down because they noticed my nystagmus. When people are drunk they have nystagmus so the cops checked my eyes. They frisked us and searched the truck for an hour and caused me to miss my movie. Has anyone else had a simiar situation? lulz
March 2nd, 2009 at 12:30 pm
I asked for a note from my eye doctor specifically for this purpose. Did you tell the cop that you had Nystagmus?
March 2nd, 2009 at 4:05 pm
That’s good to know. A lot of what I’ve read, people with Nystagmus can’t drive so I’m glad to read that many do. My son is only 4 so we’ve got many years to go. The doctor says he has poor vision and his glasses won’t correct his astigmatism but they will improve it (20/300 far.) but yet he’s been reading since age 3 & is reading even better now that he’s four (of course the print is larger in what he reads) I’ve began talking to him about his Nystag.& trying to prepare him 4 any teasing.
March 8th, 2009 at 6:54 pm
You got very beautiful eyes.. where are u from?
March 8th, 2009 at 8:35 pm
Hi Lashkyrie, thanks for the compliment! I’m from Arizona, how about you?
March 23rd, 2009 at 6:43 am
Is this that video of a guy watching badminton?
March 23rd, 2009 at 4:42 pm
Hi i have your same problem. I am curious about the fact that i don´t notice it when i look at my eyes in front of a mirror. Do this happens to any of you? thanks
March 24th, 2009 at 8:14 am
I cant see my eyes move in front of the mirror either. Don’t know why that is.
March 28th, 2009 at 11:26 pm
you know u gotta wonder if we cant see our eyes move in the mirror..then maybe their is a way to train our eyes to stop doing this…if they stoped their then maybe their is another way to treat this ( i have nystagmus as well)
April 1st, 2009 at 4:36 am
that is very characteristic of congenital nystagmus, in fact the only way u can see your eyes moving is on a video recording. Most people with this kind of nystahmus dont believe they have until they see a recording
April 1st, 2009 at 8:27 am
hi! i’m from Malaysia… thanks for the reply…
April 14th, 2009 at 11:06 pm
I also have congenital Nystagmus. I had corrective surgery done when I was 4 by Dr. Saunders at MUSC in Charleston, SC. My eyes still move horiztonal but its very slight, and usually only when I’m tired. I have 20/70 vision, 20/35 with glasses.
April 19th, 2009 at 9:25 pm
does anyone know if contacts fix Nystagmus? I am 18 and i have gone through school without glasses or anything its hard sometimes but i just move up when i have to. The main reason i want contacts is for better vision when driving so i dont die but i dont know if contacts help