matt314159

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.

In university, I interviewed there, and found I just couldn't do it. This was around 2006 I guess. It would just make me sick to sell a 57 year old housewife who doesn't know any better an $89 monster cable, when she can get much the same thing on monoprice for $5

Does selling that kind of stuff (think Monster, Bose, whatever) bother you at all?

ah--when I was interviewing, the manager made it a point to tell me the spiffs that the Monster brand products had, I think it was like 10% kickback or something at the time.

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! :)

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.