Of course, any website like NystagmusHope inspires curiosity as to exactly who is behind it. Well, let me tell you a little about myself. I was born with nystagmus, and had to learn to deal with it as soon as I could talk. Awkward moments became a part of daily life, and I quickly learned to keep to myself. There was the usual bullying, etc, which could have been traumatizing, but for the most part didn’t leave too much of a negative impact, thanks to great parents who tried very hard.
I had the typical glasses of the time, which were absolutely huge, and were always looking for a better place to rest than my nose. They weighed a ton, were made of glass, and thank god they never shattered in my face. In my childhood, I went though dozens of pairs, and it seemed I rarely had one last for more than a couple of months.
In the 90’s, round glasses became all the rage, and of course I had to have those too. They were still absolutely enormous and covered half my face, but hey, that’s what everyone wore. I was absolutely mortified at having to sit at the front of the class, and did absolutely everything in my power to make it seem like I belonged there. The best teachers were those who were nonchalant about it. Some, and I don’t know if it’s because they were sadistic, actually turned it into a bit of circus, causing some pretty extreme embarrassment at times. Couple all this with a null point that was off to one side and “dancing” eye balls and you have a recipe.
At 12 years old I underwent the Kestenbaum-Anderson procedure on both eyes and recovered very quickly, it took about 1-1/2 weeks. This significantly shifted my null point from about 45 degrees to one side, almost to the center of my vision. You can only imagine the relief, and dare I say joy, at being able to look at something like a “normal” person. Not only that, my vision did improve somewhat as well.
Trying to act normal went on through highschool, and when going to college, I sat towards the front and had to work hard to make sure I got everything. I know it sounds like I was way too self absorbed, but life in the low vision lane isn’t a picnic, and you do what you can to try and fit in. In the meantime I was always looking for something else that could perhaps improve the nystagmus.
About 10 years ago I tried gabapentin, as that has helped some people with acquired nystagmus reduce their symptoms. This didn’t work, and after reading about the potential side affects, I discontinued it pronto. About 8 years ago, I ran across acupuncture and acupressure as a way to stimulate the oculomotor points on the ear. I was extremely excited to try these out and saw an acupuncturist. A few points on the ear were stimulated, and I had the points marked on my earlobe and had small, gold ear studs placed exactly at that location. My vision did actually improve to the point of having an unrestricted license; a supreme victory.
A year or two later I ran into acupressure as another way to stimulate the oculomotor points without using an electronic pointer or semi-permanent needles. Basically, metal pellets are placed at strategic points on the ear, wrists, face, toes, etc, thereby reducing the nystagmus. In my case, depending on the day and situation, I can get it to a point where it’s imperceptible except when someone looks very closely. This has also improved vision. Psychology it’s also a great feeling when someone isn’t looking at you quizzically, wondering if you’re on drugs, had too much to drink, or what’s going on with your eyeballs.
Anyway, that’s part of my story, and I hope you can also improve yours.