Wednesday, November 5, 2014

Nystagmus awareness day

Today marks Nystagmus awareness day.
I have mentioned it a few times before on my blog but just in case you haven't heard of it yet, Nystagmus is an involuntary movement of the eyes, resulting in a great decrease in vision acuty.
It can be either present from birth or come on later in life, in my case it comes with the albinism "package".
There are different types of it: side to side - the most common-, vertical or even circular.
Throughout my whole life I was always very conscious about it and it resulted in me not being able to look someone in the eye for longer than maybe 3 seconds, ever.

Growing up in a small, provincial town in Italy I was always reminded that there was nothing science could do to help to solve any of the issues with my eyes, be it the Nystagmus, vision itself or anything else.
About 7 years ago though I started being more curious in regards with anything connected with Albinism and I would spend hours scouring the Internet for new possibilities and studies.
Armed with a tonne of papers I marched into my ophthalmologist's surgery and demanded to have my eyes straightened and to cancel out my Nystagmus.
I was massively heart broken when, after dozens of attempts, we couldn't find my null point (where my eyes almost completely stop moving) therefore a surgery to correct my strabismus couldn't be performed.
However the doctor was very intrigued with my next discovery, a study carried out by Leicester University in 2006 which looked at treating Nystagmus with medication. In case you are interested, here is the original documentation.
Basically they used 2 different drugs, Memantine and Gabapentin, to see if and how could Nystagmus be improved. Essentially they are normally used respectively to treat Alzheimer's disease and epilepsy.
It was decided I'd be put on Gabapentin, and because it's such a strong anticonvulsant, the process to reach my maximum dose was slightly longer than I expected.
Firstly though I underwent a thorough neurological check up to check I was 100% fine to start with, then I was put on a 300 mg daily doze for 2 weeks, after which I went back to see the neurologist to make sure there was no side effects. For a month after that I was put on 600 mg a day and had to go for another neurological visit; after that I started with my current 900 mg. 6 weeks later the neurologist gave me the green light to just go for it. For the first 2 years I went back every 6 months and now once a year.

There are 2 types of people in life: those that came before and after I was put on the medication. Those that knew before were all absolutely stunned by the massive improvement in my visible eye movement, the second kind wouldn't believe it when I show them videos of people with a strong Nystagmus and tell them mine would be like that.
In terms of confidence it has done me the world of good, I can now look people in the eye for minutes at a time without having to look away within seconds (although my "non straightness" still bothers me greatly), I can engage in conversation without looking rude or uninterested and stare downs are a fun challenge.
The other goal of the trial conducted in England was to see if vision itself would be improved and although I am still classed as legally blind, I have to confirm  it has gotten slightly better, especially when it gets dark.
If any of you would like to try it out for themselves, please do get in touch with your eye doctor and do demand neurological visits as these meds are not to be taken lightly.
If anyone has any further questions, please do not hesitate to ask in the comments below, by e-mail or via Facebook or Twitter.

Thanks for reading,

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