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Nystagmus – a mouthful of a word. A condition I am still trying to understand. But a condition which has effected me along with albinism since birth. Medical and health professionals describe Nystagmus as “an involuntary, often rapid, movement of the eyes”. This description will ring true for so many sufferers of nystagmus around the globe.
There are a number of nicknames given to it; ‘dancing eyes’, ‘wobbly eyes’, ‘shivering eyes’, the list goes on and on. For me, I personally used to call them “my shivery eyes”. And I was really lucky because all throughout my schooling, my friends were used to it. Once or twice we even used it to scare a stranger – my shakey eyes were my party piece if you like! We used to have great fun with it.
It was in later life that I began to have a few issues with it. Teachers would often remark that I ‘had a dreamy look’ while they taught me. This seems to be a common complaint of educators of children and young adults with nystagmus – the lack of eye control and increased movement leads teachers to think you aren’t paying attention. This is further compounded by additional sight issues if they ask you to go through what they have just written on the board – nine times out of ten you obviously cannot read it.
On a personal level, there are definitely things I find will exacerbate my nystagmus. In general, most people tell me it isn’t very noticeable unless I am straining to focus on something. But if I have been stressed out – exam time for example – the shaking gets far worse and becomes very noticeable to myself and others. Similarly, if I have had a run of 2 or more nights where I haven’t had enough sleep, its a similar situation – more pronounced shaking. The video below was recorded during a week where I was heavily reliant on my laptop – spending almost 5 to 8 hours finishing assignments. All eyeball and eyelid movements you will see in this video are entirely involuntary.
This was definitely one of those times where it was at its worst. But as I said, most of the time, those instances are few and far between.
So, have I described nystagmus correctly? And how do my readers find it affects them or their child/children? I’m sure its not the same for us all. For further information, check out the Nystagmus Network!
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Beyond The Blonde 
yes It is very difficult for together people to understand us, especially when we have to explain that US very hard for us to read . a big hug from mexicali mexico
I also have albinism and nystagmus and my now 22 month boy has nystagmus but for different reasons. My husband says that when I’m reading or concentrating on something when I’m tired and my wobble is worse my head starts wobbling. I am unaware of this but I assume it’s my brains way of making the world stiller and easier to focus on.
I also find that my nystagmus is far worse when I’m stressed and tired (and drunk) not always together. When my little boy was very young and I was up with him throughout the night I ended up with migraines because the wobble became to intense with the tiredness. I’d never had a migraine until this point.
My little boy doesn’t seem to be effected in quite the same way though. His eye movements are much smaller and more rapid than mine so it will be interesting to see what we need to teach him to deal with.
Thank you for publishing this article to make people more aware of the condition. I Wasn’t as lucky as you at school. I found that those who didn’t know about my condition found it uncomfortable to ask and so made fun instead. Raising awareness helps people enormously.
Hi, I like your blog post.