i am the first to post in this section, that’s precious... Am I the only one who has this weird thing going on with their sleep ? If I sleep many hours at night, like 7 or 8, sometimes I have to take 1-2 naps, even 3 during the day. I can’t stay awake. On the contrary, like today and tomorrow probably (I don’t feel tired and it’s 00:25 and I haven’t napped), when I only sleep 4-5 hours at night, I can’t sleep at all during the day. I just don’t feel tired. So there seems to be no middle : either I sleep a lot, or I don’t sleep much at all. And i feel tired when I sleep a lot, and not tired when I don’t sleep much. Go figure... Anyone else ?
Yes, I've had nights where I have insomnia, wake up early, and buzz all day. I also have stretches of hypersomnia, sleeping 10 hours followed by naps. So far I have not determined any rhyme or reason to the pattern.
Sleep can be very messed up with ME. My own situation was similar to yours at one time but has been much more messed up than that. I do not know that anyone has solved it. Right now I live on several two hour naps per day. At one point I was on several five minute naps per day. In the deep past I was sleeping over ten hours per day. This has changed over time. I think it might signal a change in your biochemistry ... its fluctuating.
Yup. I can sleep 7 hours, still be droopy all the next day and need more sleep. On the other hand I can have 2-3 hours sleep and keep going for the next 20. Think it has to do with what level of symptom severity I'm at, whether I've been overdoing it, adrenalin. Not anywhere near being able to work it all out to be honest, I just observe and hope.
I have that tired but wired thing where the worse my ME is and the more tired I am, the less I can sleep and the more disrupted it is. At the moment a common pattern with me is to fall asleep at some random time between 10 pm and 1 am, then sleep in sections of about 1.5 to 2 hours, with wakeful patches in between. It's completely unpredictable. I try to just let it happen and not stress about it, but it's probably not doing me any good. I've tried amitryptiline but even in tiny doses it added unacceptably to my almost ever present nausea, so I gave up.
After almost 27 years of illness I have gone through several different sleep phases. My sleep was good and felt restorative during the first 10 years when I was the sickest. Then It switched off like switch for almost 2 years . . . came back gradually to almost normal . . . went through hypersomnia phases . . . then went back to disruptive again. I certainly sleep better when I can get a short nap during the day.
I have circadian sleep disorder. it was delayed phase from 0-19 yrs, then 19-29 yrs was non-24 hour sleep wake, was hard to not 'cycle' , days last more than 24.. approx 25 hrs... then with treatments I managed to get it back to delayed last 1 year.. even at times it normalized But have no clue what's causing this. I think might be connected simply to Naviaux CDR , hypometabolism- even to fall asleep you need energy... Funny thing though is that even when I had most disturbed circadian patterns, i slept 8:00 hours, I'd fall asleep at 5:53 am, for example and when I woke up i didnt even have to look at the clock, i'd know it's 1:53 pm (give or take 2 minutes) Wish other clocks work so well in my body Also, VIP is very important in circadian rhyhtm, my VIP is low. I guess could be CIRS.
Vasoactive intestinal peptide, CIRS -chronic inflammatory response syndrome aka biotoxin illness... mold... ya know Shoemaker guy.
Lol. I went through years where I was just the same. I consider myself at the phase beyond non 24, and it does not have a definition or name yet. My circadian rhythm is often totally broken. Until some years ago I was in non 24.
@Trish My sleep is like yours - every couple of hours, I'm AWAKE! Wide AWAKE! Why the hell am I AWAKE again?! It's like a newborn waking up and crying every couple of hours at the end of their sleep cycle. They rise too close to consciousness, and startle awake. Babies learn not to wake right up, but to allow themselves to transition through to their next sleep cycle... eventually! I just wish I bloody knew why I, at 42, have lost mastery of this vital survival skill There's a whole sciencey theory I researched. Vanished from brain. Will locate.
I have long suspected this might be due not just to disregulation of sleep, though we only just discovered the second sleep regulation area in the brainstem. I suspect we have issues with insufficient PGD2, which is the hormone the brain uses to tell most of the brain cells to go quiet. If you do not have enough you cannot sleep. https://www.ncbi.nlm.nih.gov/pubmed/22024172 There has been a lot of attention on prostaglandin D2 from mast cells, as it can cause asthma and other mast cell symptoms. The brain makes a lot of it just for sleep. Prostaglandin synthesis is sensitive to salicylates and decreased glutathione levels. Glutathione is depleted in the brain of ME patients. I suspect this means that PGD2 synthesis from omega 6 polyunsaturated fats in the brain is inhibited.
I'm awake at half 2 in the morning commenting in a bizarre sleep pattern thread *sigh* I get this, with the wired but tired feeling. I've got wired but tired right now. The other thing I get is a progression to migraines that involves my sleep cycle and PEM from a few days before. It starts with not sleeping well, progresses to being awake most of the night and day(s) (36 hours?). The headache starts while I'm wired, and then I shift into a sleepy stage where I can sleep a lot. I then feel 'better' A couple of mg of amitryptyline can send me to sleep for up to 18 hours or so. Possibly I'd adapt to it if I persevered taking it on a daily basis but I don't want to risk taking it and waking up to be told it's a week next Tuesday. Even when I wake up I'm not awake enough to think of talking if I want to say something for another hour or so. Weird, not for me. @alex3619 PGD2/sleep/asthma sounds like something I'd find interesting
I have non 24 hour circadian rhythm disorder, likely ME/CFS related and i can poke it with acetyl carnitine which increases levels of acetylcholine which is likely reduced because of lower levels of Acetyl Coenzyme A (Fluge/Mella) There is very little research on how acetylcholine affects sleep but i have some personal experience showing it to be a thing. I wish i had the ability to write up a a paper for this journal which someone would take up and study.
@Trish Here's a simple explanation of the info I found that fits my frustrating AWAKE sleep problem. Fibromyalgia and ME have many features in common, sleep problems are one of them. Research (I'll locate if you want, got it somewhere) has shown that people with Fibromyalgia often have increased arousals from deep sleep, (Stage 3/4, delta wave), decreased time in deep sleep, and decreased time in REM sleep. "Alpha wave intrusions" - Brain waves which are characteristic of Stage 1 sleep intrude into stage 2 sleep (theta waves), or Stage 3/4 (delta waves). So deeper, restorative, sleep is interrupted. The brain waves of near consciousness bring you up close to waking. This happens to healthy people too, but they don't wake up. There's something different about that Alpha Wave Intrusions that make people like me wide awake. I'm trying to get referred to a sleep doctor for help, but it looks like only sleeping pills. Worth a try. Zombie with jet lag.
I alternate between getting only 6 hours sleep which leaves me completely unable to manage my usual limited functioning and 14 hours of sleep which if I manage that for several weeks/months allows something more like a best baseline functioning which I do more at my peril. Even on my good days it will take hours to come fully awake (or as fully as it gets--my brain refuses to co-operate).
