Help me rejoin the land of the living.
July 17, 2014 8:30 AM Subscribe
I've been diagnosed with idiopathic hypersomnia - which means I sleep too much and nobody can figure out why. With the diagnosis, I was essentially told that there's nothing the medical establishment can do for me beyond prescribing modafinil [Provigil]. Provigil only works a little for me, and is extremely expensive. I am currently disabled by my oversleeping (11-16 hours a day) and my inability to wake up before noon, and it's sort of ruining my life. I feel really let down by my doctors and hopeless about the future. Is there anything else I can do to manage this condition and/or my life with it? Way too much more inside.
Special snowflake details which might be useful or might just be obnoxious:
- Yes, I practice all the aspects of good sleep hygiene you can possibly think of, and then some.
- It is NOT due to: sleep apnea, restless legs, narcolepsy, or chronic fatigue.
- Confounding factor: I am severely depressed, and have been since around February 2013. The sleep issues did not become a major problem until about May 2013, but have since become progressively worse (along with the depression). I can correlate the depression with the hypersomnia, but I cannot determine whether one is causative of the other (I have experienced each without the other, but more frequently they are correlated). I am in treatment/on medication for the depression, but have only been able to reduce its severity a little.
- Confounding factor #2: I also have delayed sleep-phase syndrome. If and when I ever have a "normal" day (where I feel like a normal human being, rather than a particularly listless and sickly slug), it can be difficult to get to sleep at night, as my natural preference is to sleep around 3-4am and wake at 11am-noon. The depression medication I'm on helps with getting to sleep, though, so I don't see it as a big contributor to my current problems.
- I have done 2 overnight sleep studies, one at home and the other in a sleep lab. Both showed "normal sleep architecture" and no apnea.
- An MSLT (multiple sleep latency test) was also done. Result: Positive, meaning that I fall asleep in significantly less time than a normal person during the day when given the chance, but there was no REM-onset sleep, which means I do not have narcolepsy.
- I am deep-down bone-tired all the time. I do not, however, fall asleep randomly throughout the day; once I am up, I'm up, and I can make it through the day unless I sit still with nothing to keep my attention or lie down on a couch or bed. Driving is not a hazard for me. Tired, not sleepy.
- Waking up in the morning is my biggest issue. I routinely sleep through upwards of 15 separate alarms with no memory of having heard them at all. I have slept through final exams and important life events. When I do wake up, it is physically painful for me.
- The last major bout I had with this issue was from 2004-2005. Some days during that period were worse (my personal record: 27 continuous hours of uninterrupted sleep), but the overall episode was much shorter (~9 months as opposed to ~18 and counting this time around). In between the end of that episode and the beginning of this one, I was able to hold a job starting at 8:30am for years at a time. That sort of thing is now completely impossible for me.
- Caffeine helps, but ramps up my anxiety really badly.
- Provigil (modafinil) helps, but it's very cost-prohibitive (and no, purchasing it quasi-legally from overseas is not an option).
- Currently I am sleeping around 12 hours a day, although now and again I'll have a bad day where I'll wake up at noon and then be out again by 8pm. It feels like this is just a build-up of sleep deficit that causes these bad days, but there should be no sleep deficit occurring when one is sleeping 12+ hours a day!
- Given my inability to wake up, strategies like blue light therapy have been total non-starters for me. If I'm able to wake up at all, it's usually barely in time or 10 minutes late for wherever I'm supposed to be; trying to wake up an extra 30 minutes early so that I can sit in front of a light just isn't doable at this point.
I feel like a failure because I'm so completely unable to cope with normal life at this level of energy. It's exacerbating the depression big-time (or they're feeding off one another, anyway). I'm wasting my entire life sleeping, and I have better things to do! I am better than this. It's profoundly depressing to know that I am a smart, capable, amazing person who... isn't smart or capable or amazing at all right now, because of this issue.
TL;DR: Has anyone dealt with idiopathic hypersomnia and figured out effective ways of coping? Is there anything else beyond caffeine/modafinil/good sleep hygiene that I can try? Are there any other potential causes that I should look into? Do I just need to adjust my attitude and realize that this is my life now, and that I need to learn to live with it? And if so, what are some good strategies for accepting this disability and carrying on?