**I am looking for people to write their own experiences of narcolepsy so that readers might understand the reality not just the symptoms, if you wish to share then i would be most grateful because after all i think people want more than just my point of view**
Sam Toombs: Jukesgirl@googlemail.com
(This post is an updated version of my introduction to PWN:)
I have never really told anyone about the way my narcolepsy affects me and it would be nice to talk about it i guess. I was diagnosed about 5 years ago after my symptoms presented themselves about 3 years before that, so i suppose i have been quite lucky in that i was diagnosed very quickly. I had some great doctors who really helped me out. But i suppose i should start at the beginning ...
When i was at Secondary school i used to be top of the class i always used to get A's, i was a model student and proud of it, i enjoyed learning and i enjoyed school. I passed my exams with flying colours, and i went on to College to study Law, Sociology and English Literature, i would have been about 16 at this point.
I loved it i got new friends, obviously keeping in touch with the old ones but i was having a great time and so when i started to sleep a lot more i just decided that i had been working hard and it wasn't abnormal. Then i stopped being able to go out, by about 4 or 5 in the afternoon i was just so tired i had an overwhelming urge to sleep and i was so weak, i couldn't understand it. My mum said she used to sleep a lot at my age and it was all part of growing up.
When my first year was over i got my results, i was walking with my friend and we came to a set of stairs, i was feeling weak but i didn't think anything of it until i collapsed and fell down stairs, what was confusing at the time was that i was awake throughout it, i just couldn't move, i got up after about 5 minutes and made my friend promise not to tell anyone, i was so embarrassed. After this i started to sleep more and more, by the end of my second year at college my friends had even taken to calling me 'Sleepy Sam' they helped me a lot, they used to wake me for lessons and walk with me when i was feeling unwell. i still didn't explain to anyone what was happening because i didn't know. When i went to my Doctor they gave me anti depressants, i thought my problems were over but the drugs just made me fit.
I went to University the next year and thats when things started to get really bad. My grades had always been good but now i couldn't concentrate. I couldn't wake up in the morning and when i did i couldn't move, i used to wake up but my dreams were still there with me in my room, i couldn't make the hallucinations go away. When i fell asleep through my first year exams and didn't get woken up by anyone i realized there was something wrong (both with myself and the way that exams are invigilated(!))
I went home to my doctors and explained everything that was going on, he was a real star! He took my file home and spent the entire weekend researching everything about me, my family medical history and rare conditions. I went to see him the next week and he told me i had narcolepsy. i couldn't stop crying - i really wanted it to go away. I went through every drug there was on the market, he tried me out on new drugs and experimental ones, he organized counseling and a proper diagnosis at a different hospital that specialized in neurological disorders. i can not imagine how i would have got through without his help.
When i went back to university i eventually had to stop the medication, the side effects were so horrific, the hallucinations and the paranoia got the better of me and to tell the truth i went a little crazy from all the drugs. Recently i went back on drugs, i just couldn't stand to try by myself anymore - i could barely stand up without falling asleep and i was averaging about 5 hours awake a day, my work was obviously suffering. I am now on 150mg of Modafinil and 30mg of Citalopram. I sleep more than most and my social life is pretty non existent, i fall down and i fall asleep in my meals. I have been through every humiliating, painful and degrading test, i have been poked, prodded and talked to for over 3 years and it seems finally there is an internet presence where i can find like minded people who really understand me.
I still keep in touch with my neurologists and have started visitng them again since i went back on my meds - i would like to say that it was the not knowing that was worse and the diagnosis was heaven sent, but the fact of the matter is that it is the Narcolepsy that is the worst. I treasure the friends i make here who normalise my situation and can really respond to how i am feeling, i wouldn't really have coped without them, and so for that i thank everyone who has given words of advice or courage, sympathy of condolence , to me or the PWN board in general.
I shouldn't complain, i could have it so much worse, i have a great family and friends but you know however much you try to explain to them what it is like, they just don't get it i suppose. I find things more difficult than ever, my symptoms seem to be getting worse.
Sam
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