First post

Ah, the inaugural post. I feel it should be something profound, but I'm afraid it's not in me. I'm a sleeper who is always sleepy. That about sums it up. Technically, my diagnosis is idiopathic hypersomnia, but my doctor still has a big question mark over Narcolepsy because he thinks I'm having cataplexy, which isn't a symptom of IH.

I suppose I should explain my journey so far. I have always been an excellent sleeper, which is something that never bothered my parents until I was a teen and sleeping 16 hours a day and even more during the summer breaks. However, I just thought I was repaying a sleep debt so I never considered seeing a doctor about it. Jump forward to March 2008 when I visited my family doctor for a sinus infection, and he saw my tonsils were big (always have been). My two options of getting them removed were to see an ear/nose/throat doc, who rarely removes tonsils anymore especially at my age, or to see a sleep doctor and hope they block my airways enough for him to OK the surgery. The first appointment happened to be with the sleep doctor, who said since I didn't snore or have apnea symptoms, he's going to have to decline the surgery. However, I answered this patient questionnaire with some answers suggesting I had narcolepsy. (Did you know it's not normal to be able to dream while you're awake and have stuff walking around in your bedroom? Yeah, neither did I.) So I did my overnight test (PSG) and stayed the next day to take monitored naps (MSLT). I got the results back a few weeks later, and he said I only had REM sleep in one nap, which wasn't enough of them to get a diagnosis of narcolepsy. Also, I slept pretty soundly and normally through the night (not normal for narcolepsy), but I did fall asleep in every single nap under 10 minutes, which isn't normal. So basically, IH is a diagnosis of yes you're overly sleepy but for no apparent reason.

I did end up getting my tonsils out by the ENT doc, but I haven't seen any improvement in my sleep quality. After I healed from the surgery, I started taking stimulants to keep me awake during the day. Tried Provigil, which is supposed to be this wonder drug, but it didn't work AT ALL for me -- just made my joints hurt really bad. So the doc put me on dextroamphetamine/dexedrine. I've been kind of left on my own to figure out what dosage works best for me, so after a few increases, I now take 20mg in the morning and 10mg at lunch. I like it except for the crash I have around 6pm, still leaving me with having to take a nap after work.

I'm not even close to being done with this story, but it's time for me to leave, so more background story to come until I'm caught up and posting in the present tense. :)