Sleep deprivation for PwME

Sleep deprivation of some kind seems a very common symptom for PwME, and it can have significant consequences all of its own, depending on severity. Sleep deprivation must be a consequence of many illnesses. My wife never really gets a healthy refreshing night's sleep, no matter how many hours she is asleep. Has any research (good, well controlled, well intentioned research that is) ever been done to separate out the impact of the sleep deprivation alone for PwME, from all the other illness components which contribute to the misery for PwME. My wife certainly feels that the never-ending lack of good refreshing sleep is a major contributor to her problems.

 

Gosh yes! I'd LOVE to know. I can't get more than 4 or max 5 hours broken sleep these days, and that alone would ruin a healthy person! I was ill enough at the start sleeping lots like your wife, and waking up unrefreshed.

I've read a lot about the effect of frank sleep deprivation like mine. And it's depressing. Long term it can cause neurological problems such as Alzheimers, dementia, maybe Parkinson's too, can't remember, (my memory is messed up - definitely a lack of sleep side effect, together with increases in pain, headaches, mood disorders, digestion problems...)

The neurological illnesses are due to damage by waste products - adenosine - that accumulate while awake and can only be disposed of during sleep.

So for those ME patients SEEMINGLY getting enough hours sleep, but waking up feeling like they've not slept, I wonder if this cleaning system is malfunctioning? If I remember correctly, cerebrospinal fluid washes the adenosine away, and they recently discovered a also a special brain branch of the lymphatic system that helps too.

I think this contributes to the horrendous "poisoned" feeling so many of us talk about. For me, it results in a migraine. The apotheosis of total-body poisoning from full brain overload poison, my stomach, guts, ugh... Non-cleaning of adenosine out of the brain!

From using energy in the brain. Not enough lying in a dark room eyes shut, no noise.

I'm free-running now. My brain is too tired. But adenosine is part of the energy process. Someone please take over

 

I can so relate! I spend at least 6 hours 'unawake' but I don't think I get much, if any, actual sleep.

There is now thought that this lack of waste removal due to lack of sleep contributes to dementia. This worries me a lot.

 

My sleep is generally ok. I seem to go through patterns of getting more or less (6-9), and when it's less that does grind me down a bit.

I've read that people with autonomic problems can be more likely to have disrupted sleep.

Someone was asking me about sleep medications recently, but everything I looked up seemed to come with quite a collection of side-effects. Anyone got any great tips for drugs with little side effects? I took a half-dose of Night Nurse a while back and I felt completely spaced out for 48 hours: it was quite fun in comparison to my otherwise sober life.

 

@Esther12 yes, that's the problem . They all come with side effects, and GP's don't like prescribing them for more than a couple of weeks to get you through a bad patch. There are many pills, with a multitude of risks and benefits.

I think your friend should see a sleep doctor and try and get to the root of her sleep problem. If all else fails, there's pills, and they should be able to help her with a plan to use them safely and to best effect, as my daughter who has a sleep disorder, does.

They can't do much with me... I need to wake up in the night to attend to my dry eyes. Can't be drugged.

@Little Bluestem Oh heavens, dementia is a worry.

 

Well, guess who's awake at 3:30 am. And I need to 'get up' at 8. I'm off to try to get to sleep again.

 

I can sleep through the night but I don't feel any better for it. It might be an individual thing. It's how I feel when I wake up that is the problem. Even after 8/9 hours sleep I feel wretched.

Something paradoxical can occur as well. A shorter sleep overnight or a bad interrupted sleep or insomnia can often leave me feeling better the morning after. It's as if "something" resets over night. This effect only lasts for a night or two and if I try to recreate it over a few days or more frequently it vanishes.

5am to 10am I feel wretched and try and sleep through this time. The more restorative sleep occurs then and I can function better if I sleep through these hours. When I saw "more" I mean more than my usual now, but nowhere near pre-ME.

Something that I have noticed in the past 10 years is that I can now nap during the day and feel a little better for it. Previously, if I had a nap I felt worse for the rest of the day, then slept and still felt awful the morning after. Now naps seem to give me a boost and I also can sleep normally the night after them. I do have to feel genuinely tired or sleepy or flu-ish though and that's not how i feel every afternoon.

Barry, has your wife tried sleeping at different hours or having day time naps and does it make a difference?

 

When I was in NYC in June, I read an article in a journal about something called something like " delayed sleep phase disorder" : it may not have been that exactly. Something similar.

Odd thing is that I slept very well for me for the 5 nights I was there, going to bed at 10 and falling asleep quickly, waking little in the night. That equates to 3am Uk time and I normally fall asleep here around 2-3 am, waking frequently.

I must see if I can find something about circadian rhythm disorders. I have been a poor sleeper from birth according to my mother.

Interestingly I had a bit more energy too but I injected myself with heparin before departure which is used as a ME treatment in US. Something else to research. Hard to identify one single factor.


ETA:https://www.sleepassociation.org/sleep-disorders/more-sleep-disorders/delayed-sleep-phase-syndrome/

 

NADH seems to stop my morning stiffness, which goes a long way towards helping. Amitriptyline seems to make my sleep more refreshing. Poor sleep always indicates a bad day is ahead.

 

When I go above 25mg, I get that too. But 10mg is too low. 25mg is my sweet spot.

I have similar problems with melatonin. 2.5-3mg is probably my maximum, but it only works for one or two nights.

I notice I sleep most deeply if I go to bed around midnight. An hour too early and I lose about half my deep sleep. An hour later and I don't sleep long enough.

 

Yes. Too much activity affects my sleep badly. Whether it's autonomic, I'm not sure, but it might be.

For about 18 years (since I was 14), I've had increasingly poor sleep (until this year). When I used a FitBit I was at ~30m deep sleep and ~15m REM sleep (or was it the other way around?) early this year. I rarely dreamed. I'm now ~30m + ~45m, respectively, and sometimes up to 3h combined of the two types of deep sleep. I've always had enough stage 1 and 2 sleep, though.

Poor sleep also increases my pain and, of course, fatigue.

ETA: I should add, though, that I don't just take ami. I take oxytocin and a teensy bit of lithium orotate from time to time too. It's hard to say what has which effect. The NADH and B12 may play a part too. The NADH seems to stop morning stiffness.

I know that what works for me probably won't work for others.

 

My wife tends to do that when it's a bit too late for optimal pacing, and tends to go for "marginal pacing" in that respect. She just hates to not do what little she can. But we do talk about such things from time to time .

 

All medications come with a list of side effects but that doesn't mean you will feel any. I take trazodone and it comes with a whole list but I am fine on it. Several ME docs rec'd trazodone for sleep. It's an antidepressant but applied in a much smaller dose works great for sleep. It's also non addictive.

 

Menopause insomnia is worse than ME insomnia. It is the most miserable feeling.

 

Poor sleep quality is a hallmark of this wretched condition. The specific abnormalities often vary from person to person but i can relate to some of what your wife goes through and go through other different ones that also are likely ME related.

Same here

I know exactly what you mean on this one. I just take advantage of it when it happens.

I was diagnosed with this for years and was told nothing else is wrong with you (which turned out to be ME)

I have much knowledge about sleep disorders, i'm happy to answer technical questions

 

If I get to the stage of researching this, I’ll come back to you @Alvin