This means I sleep a lot. A helluva lot.
For some people, this is a symptom of something else. Most people with hypersomnia experience it because something is stopping them having a good nights' sleep otherwise (like insomnia, or sleepwalking). As far as my neurologist can tell, I have nothing stopping me from sleeping properly overnight (except for a bit of leg restlessness). So what I have is called Idiopathic Hypersomnia (otherwise translated as 'She Sleeps A Lot But No One Knows Why'). Apparently Idiopathic Hypersomnia is very rare and most neurologists will go their entire career without seeing it.
I've still got have some tests to check everything out, but there isn't much chance of this condition improving. I can only work at managing it, through routine, good sleep hygiene, and some medication too.
Want some idea of what my life is like?:
When I'm up and doing something, I'm fine. I go to work, I don't randomly fall asleep on the job, and no one meeting me would ever think there was anything wrong. In fact, most people think I have loadsa energy, because I'm a chatty, extraverted type of person. It's in the 'down time' that things get weird. If I have a day off, and nothing hugely pressing going on, then I will sleep through the entire day. The ENTIRE day. I'll maybe get up every six hours or so to go to the loo and eat something, otherwise I'm totally out. And even if I do manage to keep myself awake for a couple of hours, I feel like a total zombie. I am never refreshed. I never feel 'awake' like I remember I used to after some sleep. I find it very difficult to get up after a long sleep. Plus the dreams are insanely intense and vivid.
I will sleep through at least one of my two days off during an average week. I like to think I'm a little bit like God - working for six days, then on the seventh I rest!
Normally I'll fall asleep during any extended period of 'down time'. If I'm not talking or doing something, soon enough I will end up nodding off. Which means going to the cinema or the theatre is very difficult (or at the very least embarrassing). It also means I'll probably never drive - can you imagine what would happen if I got stuck in traffic?!
My longest sleep session was 44 hours - spread over a three day period. But it's not unusual for me to sleep 30-32 hours out of a 36 hour stretch (that's about the time between getting home from work one evening, having the next day off, and getting up to go to work the next day). If allowed to, I can easily sleep 18 hours a go EVERY NIGHT. But of course I force myself to get up, and over a stretch of days I'll just end up feeling really sleep deprived, like anyone might do if they stay up all night or something. If I go for too long without having a sleep day, I'm a wreck.
Hopefully, over the course of my blog, I'll be able to let you know how my condition develops as I try different medications and stuff, and if there is anyone else out there suffering then please do get in touch. Don't think I can do much in terms of advice, because I'm still learning what this is all about, but sometimes a bit of friendly support is all you need to feel like you aren't going insane!
Hugs and High Fives,
Nicole
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A fascinating but disturbing condition, Nicole. And no, I don't suffer from it - mostly the opposite, at present - the inability to sleep for a satisfyingly long enough period, due to depression.
ReplyDeleteWhat medications can you possibly be prescribed? Do you know about lucid dreaming? Might you try it, and through it, maybe re-educate your system into more normal sleeping patterns? Anyway, this condition doesn't seem to affect either your reading abilities, and certainly not your writing, which is a pleasure to read.
this is interesting, I can also sleep for 20 hours at a time longer if i have no alarm, but i always feel terrible when i wake because of oversleeping. I suffered from insomnia for years, I have now set my body clock to a regular routine and don't let my self sleep for over 12 hours at a time. I guess you have tried this, thanks for sharing.
ReplyDeleteHi there, I was encouraged to find your blog. My previous doc said my hypersomnia came from situational despression because of many stressful events happening at one time and my 'chemicals' getting off. He said the reason I couldn't 'will' myself awake was because it was chemical. I went on meds for about 9 months but the side effects where worse than sleeping so I got a second opinion and got off them. My new doc and I are trying to manage my diet and I'm exercising like crazy but my weight keeps going up (which I've read sometimes happens for people that sleep so much) so of course we don't know what's causing it. But girl, I can understand some about the extreme amount of sleeping. I was sleeping 13 hours at a time...now I'm sleeping around 9 1/2 which is better but I'm a little like a sleep deprived teen at that amount. I have to be careful of my routine. I go to sleep around 8:30pm which seems SO early to me but it's what I need to function...and I'm running into a lot of folks who don't understand that it's more a chronic illness and not just something I can get over if I rest during the weekend..that's frustrating. So hang in there and thanks again for sharing. If you learn anything new, I'd appreciate hearing it...of course it's been comforting just to see that I'm not alone in this struggle.
ReplyDeletehi, I'm really fascinated with your case. I keep notes of my dream to practice lucid dreaming. have you ever experienced lucid dreaming in one of the downtime?
ReplyDeleteI have hypersomnia. Your case sounds more like narcolepsy to me. Either way, it totally sucks.
ReplyDeleteHello Nicole. I also have hypersomnia. It might be good for you to check out the facebook groups 'Idiopathic Hypersomnia' and 'Major Somnolence Disorder'. We are numbering in over 1000 and meet more everyday who have this rarely diagnosed disorder, and offer support, answers, and feedback from the community and to discuss the direction of research that is being done to help us. The first Hypersomnia Conference will be held on March 8 in Atlanta, but they'll be recording the conference for those of us who won't be able to attend. I invite you to join our group of sleepyheads.
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