Hi, I'm Aimee. Finally diagnosed with N w/o C yesterday. FINALLY. I'm 42. I have been excessively sleepy since I was 20 after I had mono.
I was a self diagnosis going in. I knew I had all symptoms other than Cataplexy. First began experiencing Sleep Paralysis and Hypnagogic Hallucinations when I was 12. I was very embarrassed and didn't tell anyone. When I was 14 I fell asleep standing up which resulted in 9 stitches in my eyebrow where my head hit the wall. I fought falling asleep in inappropriate places all my life. I began to become extremely sleepy after I had mono in 1991. I had insomnia for a year and then after that my daytime sleepiness escalated. I had numerous tests but NONE of them sleep studies. This was in the 90's. In 1997 I fell asleep driving and totaled my car. Two summers ago I nodded off and ran someone off the road. I always fall into dreaming immediately, even while I'm still half awake.
My sleepiness at this point is so bad that I've contemplated ending my life because after 20 years of feeling half dead, sleeping my whole life away,being accused by partners of being lazy and weak, losing touch with my friends, any chances of having children and a relationship, I couldn't really imagine 20 more years in this nightmare. My life currently consists of sleeping 14 hours a day and work. I have no life. I can't walk to the bathroom without wanting to drop to the floor and take a quickie. I accidentally face-planted in the snow trying to scrape my stuck car out of the snowbank last winter and literally fell asleep because I couldn't resist catching a few zzz's. I am not exaggerating, I honestly wish I were. I take micro naps constantly. At my desk, at the grocery store, at a stop light, while I'm walking...bad idea, shouldn't try it but I seriously can't help myself. I've ran into walls or knocked things over at work so many times that I've lost count. I'm past embarrassment, I don't even care anymore. I have told my coworkers that I have this and they are very cool with me....so that's a plus.
So here I am. I feel vindicated a bit considering it took 20 years and my own brain to see the signs. But since I've been diagnosed, I found out that my cousin has it and I'll be honest with you all. My dad had every symptom too. And he's passed on now but I would bet all my money that he had it too. And because I grew up watching someone sleep constantly and fall asleep eating and half standing, I think I didn't see my signs as anything out of the norm. And lets face it. Narcolepsy has a big stereotype. And I didn't really see that I fit that stereo type (the cataplexy) but once I looked deeper, I realized I have everything else. There is so much more to Narcolepsy than falling asleep in weird and dangerous places. i wish more people realized this outside of this community. I mean, I really wish there was more awareness because I would have been diagnosed YEARS ago. And my life would not be like this.
Do I sound half mad? I am out of my mind with exhaustion right now and I even took my first dose of 150mg of Nuvigil that proceeded to nothing for me other than make me feel like I hit a brick wall of blinding nausea and exhaustion 6 hours after taking it. I didn't even realize I'd been awake enough to make it all worthwhile! And I"m afraid to take it again. Who wants to go through that at work? Not I!
Anyway, there is my story(book) and I'm sure there's more to it but I'm too knackered to remember right now. I hope I learn how to cope by learning more and using the tools around here. Thanks for reading