Hey, just joined the other day and wanted to say hi! I'm Dani, and my friend sent me a link to these forums when I told him that I was having trouble with my narcolepsy. I don't really know anyone my age who has it, so I've never found anyone to connect with and share. Everyone else in my family has sleep apnea or insomnia, so they're no help. It used to get so frustrating in school, or even at home, when I'd complain about being tired and hear someone tell me that they stayed up til 3 am and feel fine. I'd hear so many times from people that I was a teenager, and teenagers slept a lot. I used to beg my mother to feel rested, or cry myself to sleep begging whatever God was up there to just let me stop being tired for one day. Even my old doctor didn't seem to care about it; I'd been telling her I was exhausted all the time for years and all she'd tell me was to get a bedtime routine: drink warm milk, take a shower, not watch t.v. or use the computer before bed. It got so bad that I was constantly depressed (because I wanted to be able to sleep better) and tired. I had to switch doctors because there was NO way that I was going to be ignored about my problems; drinking milk was NOT going to fix me sleeping 14+ hours a day.
My new doctor immediately ordered blood tests and other things (to see if I was anemic), and when it came up on my blood screens that I'd had mono in the past, he thought he'd found the problem and had almost given up. I eventually convinced my psychiatrist to order a sleep study, since she realized that being on strong stimulants for ADHD should not have me this tired, but then decided she wouldn't. If she did, she'd have to give them all my mental health notes and she was worried they'd write it off as depression; I got told that I was just depressed a lot too, and for sorta good reasons.
For the first 15 years of my life I lived with an extremely abusive father that pretty much screwed me up. I'd tried to kill myself, and used to cut on my thighs. I was in a really low place in my life. He didn't believe in doctors or medication. Thank whatever's in the sky that my mom did.
So I went back to my new GP, and he ordered a sleep study.
The sleep specialist immediately knew something was wrong when he started talking to me: I had deep dark circles under my eyes, I looked like I would pass out sitting in front of him, and I was on 72 mg of concerta every day and still felt that tired; so I had the overnight study done, and the nap tests the next day. Funny thing was, I had a hypnagogic hallucination (where you dream while you're awake) during one of the naps. I went back about a month later, and he confirmed it as narcolepsy. It was such a relief.
All the things that were weird about me all seemed to make a lot more sense; I even had a name for those weird dreams I had where I felt like I was awake but wasn't; I knew why my jaw felt like it would fall off, or my entire lower body went numb when I got nervous. I had always know I wasn't sleeping because I was depressed, but now I could prove it. Most people would be devastated to be diagnosed with a neurological disorder, but I was relieved, happy, excited. I can live with having a disease, but not knowing killed me every day. Everyday I woke up tired after sleeping for any amount of time made me want to cry. I've read that "there is an average 15-year delay between onset and correct diagnosis which may contribute substantially to the disabling features of the disorder" and that just astounds me. I'm 18, and I've been struggling with this for maybe 5-8 years at the most. I can't even begin to understand why anyone would put off getting checked out for being that tired.
I still take my concerta, because it really does help me when I take it. If I do, I might still be tired, but at least I can force myself awake after 8-ish hours of sleep. I also take modafinil when I need to do things, like when I was still in school (I graduated this may passed), or when I do get a job.
Sorry for this long post, I just wanted to get my story out there and talk to other people who are going through the same thing.