My struggle
Telling a narcoleptic story and trying to be positive is a real challenge. Narcolepsy just isn't positive. If I have to mention positive things then the only thing I can come up with is that narcolepsy forced me to listen to my body and ignore stupid people.
I suspected I had narcolepsy around 1985, I was 20 years old. I fell asleep everywhere and had read a tiny little article in the newspaper about narcolepsy. I asked my neurologist at the time if it was possible I had narcolepsy. He didn't think I had it, it was too rare. The neurologist suspected it was all "between the ears", a mental problem. So I kept on struggling, fighting against the sleep, in the mean time searching for information, and there wasn't a lot at the time. One day I got my hands on the name of a neurologist in Leiden hospital who had made narcolepsy his livework. After telling him my story he wanted to see me. He gave medcines and diagnosed me as "suspected with narcolepsy". After the discovery in Stanford of the lack of hypocretine (my neurologist was involved in the research) he tested me on the hypocretine. Well, the result was I didn't have any. So finally, 14 years it was sure I had narcolepsy. I was 34 years old at the time and after fighting myself all the time, now was the time to start 'healing'.
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