Hi, sorry, I'm kind of new to all this, I hope I go about it right
But anyway, I'm a 14 (nearly 15!) year old girl living in England. I was only officially diagnosed in September this year although I've been having symptoms for over three years (mostly excessive daytime sleepiness but recently my cataplexy has been developing as well). I'm currently on Modafinil (Provigil) and it's working but only to an extent: I still nap a fair amount and I struggle a lot with staying awake during school. My family and friends have been very supportive, luckily, and so has school, but I was wondering if anyone would have any experience or ideas about what provisions or help I can get or ask for from the school and also from the exam boards when I do my GCSEs.
Obviously exams aren't really ideal for narcoleptics - sitting for long periods of time in a warm room doing boring things is kind of asking for sleep We've been told that although my GCSEs aren't until Spring/Summer 2015 we have to start inquiring about provisions etc now, but we're not really sure what we can ask for. I might need my own room so that if I fall asleep I don't disrupt others, but will I then be timed while asleep and get that time at the end to make up for it? That seems a bit unfair both ways, particularly as I'm always woozy and disoriented when I wake up. I'm more sleepy in the afternoon: can I make sure that most if not all of my exams are morning ones? I always fall asleep during languages 'listening' exercises: what about that?
I've done one 'controlled assessment' so far, which counts towards my English GCSE, but my teacher was very lovely and let me do it in blocks and move around in between, and I took extra medication too. I can't do that all the time though.
If anyone has any advice or experience it would be greatly appreciated, thanks