I was officially diagnosed with severe idiopathic hypersomnia in August, although I have suffered from it all my life. For as long as I can remember, I have slept and slept and slept. Waking up has always been a huge challenge, no matter if I sleep 6 hours, 9 hours, 12, or more. My record is 22 hours asleep. There are many days when I sleep for 16-20 hours and less than 8 hour later I'm back in bed for another 16. Most people like to sleep in on the weekends, but I usually don't get up till 6 pm or later. I have missed many days of work because I could not wake up and get out of bed. I would take 2 hour naps every evening after work, and wake up feeling like utter crap.
Diagnosis came after I complained to several doctors about excessive sleeping. Most of them just told me I was lazy and I just needed to get out of bed and go do something. Finally one listened and sent me to a neurologist, who ran all kinds of bloodwork, ordered a sleep study and a narcolepsy test, even a CT scan of my head. Blood work came back satisfactory. The sleep study ruled out apnea and while I do exhibit some of the symptoms of narcolepsy, the test ruled it out. My head and brain are normal.
The doctor finally confirmed what I have known all along - hypersomnia. Idiopathic just means the cause can't be determined and severe... well it means it's bad. I have been prescribed Provigil and have been on it since September. The results are amazing. I only nap about once a week now. In fact I tried to nap today but couldn't! Waking up in the morning is no longer so difficult. I still have a tendency to sleep all weekend, but instead of waking up at 6 pm, I wake up anywhere between 11 am and 3 pm.
I no longer feel like sleep is controlling my life. I finally feel like I actually have some control over sleep for once.