I wrote about my sleeping habits and sleeping problems at some length in this thread from a couple of years ago : https://www.s4me.info/threads/ive-gone-nocturnal-again.2125/ In recent months I've been getting to sleep later and later. So, I'm currently getting to sleep at about the time my (now retired) husband gets up i.e. about 7am - 8am, and I wake up at about 2pm. I'm not exactly jet-lagged, which is how I felt when I was at school, university and work, but I am permanently tired.
How my sleep is depends on how much I am doing in general. If I'm not overexerting or in PEM then my sleep is normal but unrefreshing. If I'm doing too much then I can often need a couple of hours sleep in the afternoon. in PEM, typically I have trouble waking up after only 4 hours or so of sleep (sometimes less). Most of the time I can't sleep again until the night but occasionally I'll be able to get another few hours or so during the morning.
This. When well rested I have a sort of bi-phasic sleep, i.e. go to sleep ok, wake around 3am for a while, go back to sleep, wake around 5.30 am. Don't feel refreshed exactly but definitely somewhat better than the evening before. With PEM it's a very different story: I struggle to get to sleep, then sleep 90 minutes, wake 90 minutes, and repeat until 4 am or so when no more sleep is possible. Or, if it gets really bad one session of 90 minutes is all I get, if that. Definitely not refreshing. Back in the days before I got the pacing thing sussed I had sleep problems all the time, i.e. I was never rested well enough to sleep. Completely incomprehensible to any healthy person. Sleep problems have also changed over time. I had some years with hypersomnia. Later some months of day-night reversal that fortunately re-reversed itself, and now insomnia. No idea what caused the changes. I practice very good sleep hygiene (minus the exercise advice typically included) because it helps on my better days when it's hard to resist the temptation to use my brain when it's actually working for once. But with that comes the risk of it going into overdrive and that can then stop me from falling asleep. So sleep hygiene is really good for that. But it's completely and utterly useless as soon as PEM enters the picture. I don't use sleep medication though I did try some in the past. The effect was just as paradoxical as my sleep patterns. Zopiclone would first keep me hyper-awake for 4 hours then send me into a coma-like sleep for 2-3 hours from which I'd wake feeling worse than before and that was that for the night. The sedating types of antihistamines and melatonin may have been mildly helpful for dropping off to sleep initially but not for staying asleep.
I alternate over-the-counter drugs, i.e. paracetamol-and-codeine, antihistamines and promethazine. I also use cannabis (proper amounts, not the currently-popular legal type) which helps enormously. I suffered hypersomnia at first, about 24-5 years ago, since when it has varied in insufficiency, i.e. without medication I don't sleep well at all. (Amended 'paracetamol' to 'paracetamol and codeine')
An interesting observation for me is that I didn't have sleep issues when I was in PEM, I slept ok. My issues with sleep now is when I overdo myself mentally and physically during the day and don't get proper rest in between activities, my brain becomes wired-up like I'm on adrenaline. After going grocery shopping or a doctors appointment my brain feels wired from talking and interacting and I know I won't be able to sleep because when I get home I feel high and can't come down. I find all sorts of things to do, I'm unstoppable.
Lack of sleep causes my injuries to get worse both from lack of healing during sleep and over use since I'm awake for longer. I lived in a noisy environment with an inconsiderate family from 2001 to 2013 and it definitely made my ME worse. I've moved in to a quiet bungalow now but still have to take medication to get to sleep and maintain a sleep cycle. Without medication I can involuntarily stay up for 24 to 36 hours at a time.
Sleep inversion may be a symptom of elevated blood ammonia levels[2] and is often an early symptom of hepatic encephalopathy.[3] Sleep inversion is a feature of African trypanosomiasis after which the disease takes its common name "African sleeping sickness";[4] sleep-wake cycle disturbances are the most common indication that the disease has reached the stage where infection spreads into the central nervous system.[5] sleep inversion https://en.m.wikipedia.org/wiki/Sle... reversal,can be a sign of a serious disorder.
I didn't answer the question about refreshing or not refreshing because I think my sleep refreshes what it normally should, but ME gives a continuous feeling that is similar to being unrefreshed. Does anyone else feel that 'unrefreshing sleep' as a symptom for ME should actually be 'I feel something similar to lack of sleep'? For me, that 'something similar' symptom is pretty much the same whether I slept well or had terrible insomnia. Even before ME I had trouble falling asleep. I might lay in bed for an hour or more before falling asleep. I don't know whether it's ME or age (nearing 60), but I am more sensitive to things that make sleep initiation harder. As with Mij, interactions with people can 'wire me up', with my mind repeating conversations over and over. On those nights I may eventually give in and take melatonin or 5-HTP, which sometimes works (and sometimes doesn't). I typically wake up every 1.5 hrs, pee, and fall asleep again. Quickly digested carbs between noon and nearly bedtime will make it harder to fall asleep again, so I avoid those. Fat-heavy meals will cause me to wake up feeling like my abdomen is a furnace at maximum output, which also messes up my ability to sleep. Starting a year or two ago, physical exertion past noon would also trigger insomnia somewhere past midnight, so I've had to give that up too.
I’ve never had any problems getting a GP to prescribe it in the UK. In fact the GP I had 10 years ago suggested it and it has been excellent. I only take it at a low dose a couple of times a week though.
Sorry if this has been mentioned before, but could sleep problems be due to our timing being skewed? In other words, if we slept when we felt sleepy, it would work? Having said that, there are times when I feel sleepy but absolutely can't sleep!
