I have narcolepsy. Been diagnosed for the last 5 years, no idea how long I've had it. I developed cataplexy about...three years ago.
I was 17 when I was diagnosed, now I'm 22. Teacher sent me to the nurse's office because I couldn't stay awake, nurse thought I was on drugs so she called my mother & said she would call an ambulance if my mom didn't come to get me within the hour. Mom took me to the doctor, had me drug tested. Demanded a sleep study when it came back clean. So I had the polysomnogram and MSLT.
I didn't want to believe the results when my sleep doc explained them to me. When she told me I had narcolepsy without cataplexy, but that I could develop the latter some day. Asked me what careers I was considering, told me I might have to rethink things a bit. I did have to rethink things; a lot, actually. Maybe everything. I didn't believe her. She said I could get a spinal tap to confirm the absence of hypocretin if I really wanted more confirmation, but that it was a painful procedure and the results wouldn't change anything anyway. The numbers were what they were. Nothing else would produce results like those, she said. It wasn't a mistake.
Initially, not much changed in terms of treatment. I was already taking a stimulant for ADD, and I was taking Seroquel nightly...that's a whole other can of worms. I still didn't believe it. Narcolepsy. I couldn't accept that.
Until eventually I had to. After trying college for a year, I was put on academic severance from my university. When I was actually able to get up and get myself to my classes, I usually wasn't able to stay awake through them. Try writing essays and doing labs with a brain so depleted from exhaustion you can barely think...I could only do so much. Maybe it would've been different if I'd gone to school part time, only took two classes per semester instead of fucking five. I had bitten off more than I could chew, yet my friends managed just fine with the same workload or greater. Yeah, something was wrong. Denial ain't just a river in Egypt.
I then tried a semester at a local community college. Just one. Again, stupidly taking a full courseload. You just have to try harder, my entire family said. They all thought I partied too much and got lazy while I was away at school. Despite the diagnosis, they still thought I was just lazy. Guess I wasn't the only one. But trying harder didn't get me anywhere, so I dropped out and did literally nothing for an entire month.
That's when I had my first cataplexy attack. And that was it; there was no way around it anymore, no mental gymnastics that would let me maneuver around the fact: my doctor was right. I fell down every time I laughed. It wasn't just narcolepsy anymore. It was narcolepsy with cataplexy, so now I really had to do something. I read about Xyrem, how it helped a lot of people who had what I had. It seemed like the thing to try; i just had to get off Seroquel before my doc would consider it.
So that summer, I quit Seroquel cold turkey. Which maybe wasn't advisable, certainly not the safest thing to do, but I knew I'd never get off it otherwise. The withdrawals...holy shit, the withdrawals. My dose was pretty ridiculous for a person my size, and I'd been on it a few years at this point, so I knew it was gonna be bad. At first, it was just harder to sleep.