TheMoonIsBlue
Senior Member
- Messages
- 442
I hope the title of my thread was indeed dramatic and not indeed fact, but this is one of my MAJOR concerns/fears.
Ever since I developed M.E./CFS post-mono, my sleep has just been destroyed in every was possible. Before CFS, I did have delayed sleep phase (not all the time, I could sort of control it sometimes) and A LOT of trouble actually falling asleep.
Now?
Sleep without medication? What is that? I think I have taken maybe 4- yes 4- naps since I became ill years ago. And they were more of like "twilight sleep".
I can not fall asleep on my own without medication, only maybe if I forced myself to stay up for 3 days......well, I'm guessing a trip to the ER wouldn't be far behind that!
I can not stay asleep. I did solve this for a while when I first started a certain medication, but now on a good day it is waking several times, on a really bad day it is waking up one hour after I fell asleep, then waking 2 hours later, then 1-2 hours later, and finally if I want to even be able to walk that day I'll need another little silver of some sleep med to get back to sleep.
My sleep is so non restorative it almost feels like torture when I wake up.
I dream (in my opinion) excessively. I can recall sometimes 5 or more dreams a night, in great detail. Even if I just feel asleep for a hour and woke up, I can remember my dream.
I have NO SLEEP CYCLE. None. Out of no where it will start to cycle- 2-3 hours later every day, around the clock, eventually I cycle back to my semi regular bedtime of 7am-10am. Yes, those 3 hours are the only time period that seems to stick around for my regular bedtime. This past summer for had a good period for a week or so where I was going to bed around 4am and waking up around 2 pm and could go outside and get some SUN. Then it flipped to going to bed about 3pm and waking after midnight, which is awful! Everyone else is alseep and you're dragging your exhausted body up into the darkness to begin your "day" on the couch or in bed.....
My sleep study showed no sleep apnea. It showed, as I guess, ZERO stage 3 or 4 sleep.
I need, ideally, 12 hours of sleep to feel even slightly OK with this disease. Every once in a while, when that happens, it's like Christmas to a kid. The "Eight hours of sleep a night" does not cut it for me, and sleep doc did NOT understand this. "Sleep Hygiene" and "Sleep restriction" nearly killed me. (Hello doctor, I have a serious immune problem, even if you don't believe in it, you're killin' me here!)
Melatonin messes my sleep up completely.
Probably so many of you are reading this and saying "yeah, me too...."
Is there any hope? I mean, is science ever going to pan all this out and figure out what parts of our brains are screwed up and possibly ways to fix it?
I keep reading about how the Hypothalamus is what control, amongst other things, out sleep/wake cycles........could it be said tha insomnia is a condition of the hypothalamus?
Oh, one other things just for the ladies: Hormones affect my sleep and my CFS BIG time. The 7-10 days before my period everything gets so much worse.
Hormones. Our brains. Infections. What the heck? What is going on, in nearly 2011, that sleep medicine is still so much in the dark ages? What has developed recently? The non-benzo hypnotics...that was a while back....those don't even promote deep sleep. Rozerem? Have read about 2 positive comments on this melatonin receptor drug for every 200 negative ones. Can't take any antidepressants.
Sure there are people who can go 48 hours regularly with no sleep and be only slightly the worse for it......for me, 24 hours no sleep means I can barely walk up the stairs and I will be in a semi-coma all day, not awake or alseep just alive.
What will be the long term implications of getting NO deep sleep year after year after year? Inadequate growth hormone secretion because of no stage 3/4 sleep....by the time I'm 30 will I have the growth hormone levels of a 90 year old? Will supplementing with growth hormone help? I've heard negatives a positives.
Sorry this turned out so long!
Do any doctors/researchers (WPI Perhaps?) know why M.E./CFS sleeping problems, insomnia, sleep cycles, non-restorative sleep, are SO severe?
Is there any help? I have seen CFS experts who don't address sleeping problems at all unless you bring it up to them......then it's here's some ambien (grrr!)
Ever since I developed M.E./CFS post-mono, my sleep has just been destroyed in every was possible. Before CFS, I did have delayed sleep phase (not all the time, I could sort of control it sometimes) and A LOT of trouble actually falling asleep.
Now?
Sleep without medication? What is that? I think I have taken maybe 4- yes 4- naps since I became ill years ago. And they were more of like "twilight sleep".
I can not fall asleep on my own without medication, only maybe if I forced myself to stay up for 3 days......well, I'm guessing a trip to the ER wouldn't be far behind that!
I can not stay asleep. I did solve this for a while when I first started a certain medication, but now on a good day it is waking several times, on a really bad day it is waking up one hour after I fell asleep, then waking 2 hours later, then 1-2 hours later, and finally if I want to even be able to walk that day I'll need another little silver of some sleep med to get back to sleep.
My sleep is so non restorative it almost feels like torture when I wake up.
I dream (in my opinion) excessively. I can recall sometimes 5 or more dreams a night, in great detail. Even if I just feel asleep for a hour and woke up, I can remember my dream.
I have NO SLEEP CYCLE. None. Out of no where it will start to cycle- 2-3 hours later every day, around the clock, eventually I cycle back to my semi regular bedtime of 7am-10am. Yes, those 3 hours are the only time period that seems to stick around for my regular bedtime. This past summer for had a good period for a week or so where I was going to bed around 4am and waking up around 2 pm and could go outside and get some SUN. Then it flipped to going to bed about 3pm and waking after midnight, which is awful! Everyone else is alseep and you're dragging your exhausted body up into the darkness to begin your "day" on the couch or in bed.....
My sleep study showed no sleep apnea. It showed, as I guess, ZERO stage 3 or 4 sleep.
I need, ideally, 12 hours of sleep to feel even slightly OK with this disease. Every once in a while, when that happens, it's like Christmas to a kid. The "Eight hours of sleep a night" does not cut it for me, and sleep doc did NOT understand this. "Sleep Hygiene" and "Sleep restriction" nearly killed me. (Hello doctor, I have a serious immune problem, even if you don't believe in it, you're killin' me here!)
Melatonin messes my sleep up completely.
Probably so many of you are reading this and saying "yeah, me too...."
Is there any hope? I mean, is science ever going to pan all this out and figure out what parts of our brains are screwed up and possibly ways to fix it?
I keep reading about how the Hypothalamus is what control, amongst other things, out sleep/wake cycles........could it be said tha insomnia is a condition of the hypothalamus?
Oh, one other things just for the ladies: Hormones affect my sleep and my CFS BIG time. The 7-10 days before my period everything gets so much worse.
Hormones. Our brains. Infections. What the heck? What is going on, in nearly 2011, that sleep medicine is still so much in the dark ages? What has developed recently? The non-benzo hypnotics...that was a while back....those don't even promote deep sleep. Rozerem? Have read about 2 positive comments on this melatonin receptor drug for every 200 negative ones. Can't take any antidepressants.
Sure there are people who can go 48 hours regularly with no sleep and be only slightly the worse for it......for me, 24 hours no sleep means I can barely walk up the stairs and I will be in a semi-coma all day, not awake or alseep just alive.
What will be the long term implications of getting NO deep sleep year after year after year? Inadequate growth hormone secretion because of no stage 3/4 sleep....by the time I'm 30 will I have the growth hormone levels of a 90 year old? Will supplementing with growth hormone help? I've heard negatives a positives.
Sorry this turned out so long!
Do any doctors/researchers (WPI Perhaps?) know why M.E./CFS sleeping problems, insomnia, sleep cycles, non-restorative sleep, are SO severe?
Is there any help? I have seen CFS experts who don't address sleeping problems at all unless you bring it up to them......then it's here's some ambien (grrr!)