My Story - Struggle With Narcolepsy At A Young Age.

When I was around 14 I started noticing I was falling asleep quite frequently at school, but assumed it was only because I found the lesson boring, as it was only history i fell asleep in. Within 20 minutes I would fall asleep every History lesson without fail for a couple of minutes and feel completely wide awake when I'd awaken. My parents then started to realise that I was getting more and more tired at home as well, but put it down to teenage tiredness and the amount of video games I played. Later on in my school life I was taking my GCSE's and I remember throwing a snowball at a friend and when it hit him, my knee gave way and I collapsed onto the floor and bashing my knee on the ice. I thought nothing of this. When the final exams came round, I fell asleep through most of the exams, spanning from a couple of seconds to 5 minutes a time, despite the amount of energy drinks I had. I told my Mum about this at the time and she reckoned I had narcolepsy as I showed the same symptoms as my Nan who is also a sufferer although she didnt start showing these symptoms until she was 34. Sods law i guess. At the time I was even more stubborn than I am now, and didnt want to believe I had something wrong with me. The symptoms became alot more frequent and obvious, an example is that I could not control my facial muscles whilst laughing and I got so embarrased every time I would cover my face with my hands to stop even my closest of friends seeing as this usually happened around them on the 670 bus. At the age of 16 I finally came to blows with the possibility and got checked out by my GP. I was referred to 2 different hospitals in London where they asked me to sleep several times during the day in an observation room, several hours apart. In between the hospital visits I would go out with my friends to Bluewater, the Manor Club or even the park, and everytime I would always fall over due to laughing so much. My friends and my younger sister were always the main causes of me collapsing as they made me laugh so much. I rememver getting ready for a night with my friends, but collapsing and burning my knee quite badly, I ran into the bathroom crying hysterically "Why me?!". I was really low at this point because the thought of having this condition was still fresh and a shock to me, especially as I had been bullied for 7 years over me having a dodgy eye since birth (Duane Syndrome, i know, unlucky right). What got me motivated the most to carry on in life was a very good friend of mine who despite having muscular distrophy still carries on with life. He told me "to just live with it as its not going anywhere. I was then referred to St Thomas' Hospital in London where they took a blood test and hooked me up to this little electric monitor via 18 different electrodes attached to my chin, temples, and around my head. I had to wear this for 24 hours, I wasnt allowed to wash, shower or remove these electrodes which proved harder than I thought as they were rather itchy. My parents and I stayed at a hotel overnight so we could go back into the hospital first thing in the morning and get the results. Walking around London with the electrodes attached was so daunting as everywhere I turned, people would stop and stare, some even muttered among themselves. After a while I got my results back and in September 2009 I was diagnosed with both Narcolepsy and Cataplexy. The specialist doctor (Dr Rexford Muza. Awesome name I know) answered a few queries such as the likelihood of the condition being herreditory, which is apparently >1%, considering my Nan has it and is mother of 3 and grandmother of approx. 9, i thought why me?! I carried on into sixth form and studies Literature, Media Studies, Art and Psychology. In psychology 2nd year (A2 level) I learnt alot about narcolepsy and cataplexy, however when videos on narcolepsy came on during class, I would sob my eyes out over the fully grown adults who suffer with the same condition I have, partly because I knew exactly what they were going through and it was a window to what was to come for me. Although I fell asleep through quite a few of my A level exams, I still finished school with 10 GCSE's, 1 AS level and 3 A levels and got accepted into several universities. I am currently on 3x100mg Modofinil a day and 1x25mg Fluoxetine (low level anti-depressant) for the cataplexy and have been since being diagnosed. I have not let this condition entirely run my life, even with this condition I used to street dance and play basketball. Since being diagnosed I have commited to the Gym and took MMA and Muay Thai (Cage Fighting/UFC style) up for just over a year. Although it obviously comes with limitations, I am still able to drive as long as I am medicated. I am now 19 and currently have a part time job as a barman at a local nightclub. the best thing to do after being diagnosed is tell your friends and partners, both future and present. And if they dont accept you for who you are and what you have, then there not worth sticking around with. My friends have helped me get through this as well as my family, and the relationships i have had since being diagnosed, i have been honest and told the girls straight after a week or two and they have all been completely understanding so honesty does sometime pay off :)
bakewell93 bakewell93
18-21, M
1 Response May 15, 2012

Love your honesty. Thank you for this story.