a bit about me
I developed Narcolepsy at the age of 7 with severe cataplexy 'status cataplecticus' and all of the other symptoms except for Sleep Apnea. I was finally diagnosed in 1992 when I was 12.
Have been reliant on methylphenidate on a daily basis ever since. I now also take modafinil and venlafaxine to treat my cataplexy symptoms which has enabled me to dance again.
We don't know for sure why or how I ended up this way but my dad had a theory.
In 1986 the cloud of radiation from the Cherbobyl Nuclear disaster traveled west all the way over to my home town in Nottingham. I lived in the highest part of the city which is level with a particular mountain range in russia. Throughout the next year I began to experience severe cataplexy and sleep attacks, automatic behaviour, sleep paralysis and hypnpgogic hallucinations. There wasn't a moment of any day that I wasn't collapsing and I ended up having to stop going to school. When I was 10, I had a full on nervous breakdown because I couldn't cope with the effects of the symptoms. It took 5 years before I was finally diagnosed with Narcolepsy. I was prescribed methylphenidate and pretty much sent home without any advice or support. I thought the story about the Chernobyl disaster was a little far fetched until I looked into it and discovered that radiation had indeed come over our town and my godfather also developed a very rare chronic illness that same year. In the UK many farm animals had to be culled as a result of the radiation. I guess when I wasn't busy dancing, I would have been outside playing on my swing alot. Perhaps I had a predisposition to the disease already but it is highly possible that it was triggered by the radiation.
I have no idea if it would be possible to test and find out if this really was the trigger. Either way it changed my life on such a massive scale. It took me 20 years to really begin to try to have some sort of normality. I am still unable to hold a normal 9 to 5 job, I can't drive a car and my symptoms are way too severe to go through pregnancy although I personally wouldn't be bringing any children into this world even if I could do.
So, I am now a professional teacher and performer of American Tribal Style® Belly Dance. I also write music, sing and play various instruments. Writing music got me through the darkest points of my teens but dance has become the main focus in recent years.
I am currently living in Malaysia and don't know of any other people here with Narcolepsy.
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