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Sleep management, deprivation, reduction

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THE INITIAL TWO POSTS IN THIS THREAD HAVE BEEN MOVED FROM Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

I have this too, and often spoken about it. I can wake at 3 am and feel not too bad, then go back to sleep and wake at 6 or 7 feeling like death. So strange. It is like something is being released when in sleep, at different times...
I think if we consider sleep reduction as one more variable to tune which potentially offsets symptoms, we are in a good place. Logically I can't see that as leading to a permanent solution or a safe treatment option.

That said your responses have given me the confidence to move to 6 hour windows of sleep compensated by daily provigil.

Could we set up a separate sleep management, deprivation, reduction thread? I'll gladly update that with my progress. I am new to the forum.
 
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JES

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I think if we consider sleep reduction as one more variable to tune which potentially offsets symptoms, we are in a good place. Logically I can't see that as leading to a permanent solution or a safe treatment option.

That said your responses have given me the confidence to move to 6 hour windows of sleep compensated by daily provigil.

Could we set up a separate sleep management, deprivation, reduction thread? I'll gladly update that with my progress. I am new to the forum.
There are a couple of threads on sleep deprivation found by forum search, I started one of them, but feel free to start a new one, I'd be interested to see people systematically reporting what kind of sleep pattern works best for them. I always felt consistently worse if I slept more than around 6-7 hours, the worst if sleep extended to 9 hours or beyond. The more I sleep, the harder I also find to get out of bed.

This year I had a good chance to experiment with less sleep, as I started a standard office job where I had to wake up early every morning. This meant that due to my screwed up sleep rhythm, I would only get around 4 hours sleep on weekdays. Given the sleep deprivation benefits, I was expecting this to improve my ME/CFS significantly. However, it didn't quite work out as planned. This is how my week usually went:

Monday: first day with less sleep, better than usual energy through the entire day
Tuesday: same limited sleep, but fatigue and ME/CFS symptoms start to settle in
Wednesday-Friday: pretty bad
Saturday: first day of more sleep, better than baseline
Sunday: second day of more sleep, back to usual crappy baseline

So at least for me, the sleep thing works more like a temporary hack than any permanent solution. Interestingly, similar sleep deprivation regimens have been used for depression (source). But the crux here is, how do you maintain the benefits past the first sleepless night, as going sleepless forever is not an option and two consecutive nights with limited sleep does little good in my experience.

How this relates to the mitochondria, I don't know, but I have a feeling my mitos are not much damaged, otherwise I could not "hack" myself into being almost cured from a sleepless night. Maybe there are subgroups with more permanent mito damage.
 

Wishful

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Question: does sleeping longer make you feel worse, or does whatever is making you feel worse also make you sleep longer? Alternatively, does whatever makes you feel a bit better the next day shorten your sleep cycle? I am not sure how to test this question.

FWIW, I don't feel that it's primarily a mitochondria problem. I think it's more likely to be an immune system activation problem. Mito function might be altered by immune system activity.
 

Wolfcub

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This is how my week usually went:

Monday: first day with less sleep, better than usual energy through the entire day
Tuesday: same limited sleep, but fatigue and ME/CFS symptoms start to settle in
Wednesday-Friday: pretty bad
Saturday: first day of more sleep, better than baseline
Sunday: second day of more sleep, back to usual crappy baseline

So at least for me, the sleep thing works more like a temporary hack than any permanent solution.
I find the same kind of pattern in my own experiments with sleep.
It seems that the first night/day with little sleep I can feel really good. This has happened on a number of occasions. I can feel well and normal with a hearty appetite and no issues.

But if I try it again, too soon after, it won't work usually.
Yes it does seem like a temporary solution. I have always been baffled by it and curious to know why "fresh" sleep deprivation can have a positive effect, but more of it running concurrently does no good at all.
 

Wishful

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Yes it does seem like a temporary solution. I have always been baffled by it and curious to know why "fresh" sleep deprivation can have a positive effect, but more of it running concurrently does no good at all.
I think that's an issue with other treatments for ME. I had several things give me temporary remission the first time or two I tried them, then they stopped working. T2 helped me, but only if I took one dose, with sufficient time in between (21 days, in my case). If I took it daily, it stopped helping. My theory for that is that the sudden rise in T2 boosted RNA transcription, rebuilding a supply of something that lasted 21 days. For sleep deprivation, maybe it's switching some cells into an alternate state of function, something like the cell danger response or sickness behaviour. I know of physical and electronic systems that respond to changes, but not steady-state factors, and I see no reason why there couldn't be biological systems too.
 

lenora

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In addition to sleep, has anyone noticed that the time we eat plays into the evening factor as well? I can't eat much past 4:00 p.m.-5:00 p.m. at the very latest. If I do so, I'm up all night with stomach problems, no sleep , and generally feeling wretched the next day. I'm not talking about wine saturated evenings....perhaps l/2 glass with ice, no caffeinated coffee, feeling not too full. Anyone else? Yours, Lenora.
 

Wishful

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In the past few years I've become sensitive to quickly-digested carbs in the mid-day to early evening period. I had to give up things such as white rice because it would trigger insomnia in the wee hours. If the meal has adequate fibre, it doesn't trigger insomnia. Hot chocolate before bed doesn't seem to trigger it; I haven't tested other sugar&starch foods before bed. This wasn't a problem until year 17 or 18 of my ME, so I don't know whether it's related.

High fat meals will sometimes wake me in the night because I'm overheated from digesting the stuff. :wide-eyed:
 
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Maybe there are subgroups with more permanent mito damage.
In my case, I seem to need the big 10 hours of sleep always. Its disrupted often with frequent awakings from 5 til I get up- for bathroom sessions, IBS-d bad days here and there.

If I am awake, say at 4 or 5 am, I tend to feel very awake and almost fine. Then, after a little while- the HEADACHE starts to take over and I can tell everything is heading to inflamed. So I just boil over without adequate sleep. And then everything hurts, swells aches etc.

When I get up, I feel like a zombie for at least an hour. My window of activity is between about 11 am and 2 pm.

The main symptom that comes on after I wake up, is my eyes start pouring. Most days they are pouring. On extra bad days they sometimes dry out, the opposite problem. None of this was resolved at my recent eye doctor consultation.

So they aren't pouring and then it just starts up. Boom. Hi day. Welcome to blurred vision much of the time.

Around 2 pm the tinnitus and cellophane brain start up.
 

gregh286

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Absolutely.
It's so obvious that if I do wake at 3 or 4 i never go back to sleep even though the eyes are hanging out of me.
More physical/ lack.of.sleep tiredness reduces that ghastly laden legged fatigue.
Try explaining that one to gp. I'm less fatigued when I'm more tired. 😀
When I play golf on thursday I set alarm for 4am....i have much more stamina than if I lie into 8.
Also....wrote before here. Jet lag is the king of cures on my side. Happened around 20 times last 8 years.
Can cortisol antibodies exist....?
 
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Re: sleep

To clarify my experience. I am a 30 year CFS patient (so lots of time to test these things :))

If I can reduce my sleeping hours by several hours i.e. waking up early, it notably reduces my fatigue (not tiredness), body aches, word finding problems, pots like symptoms, and other associated cfs symptoms that I typically feel upon waking and throughout the following day.

This 'sleep reduction' mitigation differs from staying up late or longer (i.e. 24 hrs); which also has some boosting effect but still carries with it most of my CFS symptoms.

I can confirm this result by intentionally sleeping in late, which further increases my CFS like symptoms the following day.

Deep sleep typically comes during the latest hours of sleep.

In other words - the more I reduce my deep sleep - the better I feel. Consistently.

However this mitigation has its costs i.e. sleep debt, tiredness, and possibly other unknown-to-me health issues - which probably build as I follow the pattern over multiple days.

In conclusion - I think there are many immune system and other changes that occur during that deep sleep, and only some or one worsen my CFS.
 
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My experience and current experiment with sleep reduction are similar to those experiences mentioned here.

Running on a 6 hr routine right now, using modafinil to compensate for daytime drowsiness. Pretty good on day 1, less so on day 2, by day 3 it is stabilized at a mildly improved state, but no where near remission. Right now I am on day 6.

Modafinil also has a unwanted side effect where it seems to alter my sleep patterns the night after I take it. This alteration improves my fatigue the second day, but also negatively affected my ability to speak. I normally have trouble speaking in an ordered way, but after taking modafinil, the following day I begin to speak in full on 'word salad' mode. I am hoping this is a side affect that may reduce as I keep going day after day.

FWIW, I don't feel that it's primarily a mitochondria problem. I think it's more likely to be an immune system activation problem. Mito function might be altered by immune system activity.
My experiment shows me you may be right.

Initially I had some hope my immune response is what causes this whole cfs problem. My evidence was the positive effect of reduced deep sleep, methotrexate, as well as the observation that arthritis immune treatments always seem to reduce the negative affects for the long term re: without rebound.

However, I am now left with the impression that reducing my immunological load just reduces the overall load on my body, which gives me some energy boost. I feel it might also do that for even a normal person. However in a normal person they don't notice the improvement because it is too small. While in my case, the root cause of the fatigue remains.
 
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Writing for day 11.

It is hard to do this well. There is a build up over time similar to a sleep debt, and If I have a 'sleepy' day (which happens with CFS unexpectedly from time to time) I will end up drifting in and out of naps all day . The first day this happens, the next morning I wake up with a CFS type hangover, second day it is reduced, by third I back to to my mildly improved condition.

I am continuing, with a goal of 4.5 hrs per night with my usual naps in the day - equating to ~6 hrs.

I am experiencing improved physical energy and enhanced wakefulness, but the cognitive issues (which are always the most stubborn of all my issues) seem to remain.
 
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Update. I continue with ~6 hrs a night successfully unless the weather gets rainy or windy (poor weather causes fatigue in CFS - there are threads about that in Phoenix rising).

Overall though I can't identify any substantial improvement 🙁.

I continue to struggle with the challenges if this disease, and do not find I am making any progress.
 

lenora

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THE INITIAL TWO POSTS IN THIS THREAD HAVE BEEN MOVED FROM Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty



I think if we consider sleep reduction as one more variable to tune which potentially offsets symptoms, we are in a good place. Logically I can't see that as leading to a permanent solution or a safe treatment option.

That said your responses have given me the confidence to move to 6 hour windows of sleep compensated by daily provigil.

Could we set up a separate sleep management, deprivation, reduction thread? I'll gladly update that with my progress. I am new to the forum.
Hi Sushifan....I've relatively new to the Forum also and have a column, CHATTING WITH LENORA, come over whenever you'd like.

I'd like to say that I have a pretty severe sleep disorder and I'm often up twice/night for at least 2-3 hrs. each. I probably average 5 hrs./night and can go days without any sleep whatsoever. If I do fall asleep, it's likely to be while I'm watching TV with my husband. The only other way I'll sleep is by reading, but I'm often up until 1-2:00 a.m.

Like you, I've found that sleeping less actually leaves me feeling better than the usual 8 hrs./night. This has been going on for years and years (I've had this for a min. of 33 yrs.). I'm afraid that provigil (as I seem to recall that I've tried it in the past) would leave me feeling too wired. I have anxiety anyway. Perhaps I just need a lower dose of provigil. I've been around so long that when drugs came along they were invariably in larger doses than those given today. The days can be very long when you don't sleep. I think it makes sense to have a separate thread based on sleep deprivation. I think the first step is realizing that you won't die if you don't get regular sleep. It's not a choice; it happens. Sleeping pills, supplements, etc., only last for 2 nights at most. I now go it alone. Is this more common in women, do you think? I went into menopause at age 40, and I'm still suffering at age 73. I do think hormones have some say in what occurs.

Thanks. Yours, Lenora.
 

Wolfcub

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I think the first step is realizing that you won't die if you don't get regular sleep. It's not a choice; it happens. Sleeping pills, supplements, etc., only last for 2 nights at most. I now go it alone. Is this more common in women, do you think? I went into menopause at age 40, and I'm still suffering at age 73. I do think hormones have some say in what occurs.
I recall having the most horrid sleep during menopause. I was very fit and well in those days (age 50, 17 years ago) But all of a sudden sleep pattern went haywire and I could barely stay asleep more than 2 hours at a time. I would get up, have a hot drink, go back and try again but always woke too early no matter what.

My doctor prescribed SSRIs (Prozac) -said early wakening was a sign of depression. I knew I didn't have depression, all I had was something sudden, crazy and hormonal disturbing my sleep! I didn't take the Prozac.

I suffered with it for ages....soldiering on, and had just acquired an extremely energetic dog who needed two 3- mile walks a day or she went stir crazy. So on I walked, playing frisbee and trying to run an online business to keep me and doggy fed. I must have been strong as an ox to keep on my feet during that.

I went to the herbalist and he made up a mixture which contained many herbs but especially Agnus Castus (Chaste Tree) That helped so much, but whenever he was out of town for a couple of weeks and I couldn't renew my medicine, the sleep issues came back.

Then suddenly -it stopped!! I got my blessed sleep again. I will never know what exact hormonal disturbance caused that, or the mechanics of it or why. But after a good 2 years it stopped.

However I always have had an inclination to delayed sleep phase since I was 12-13. So rarely get to bed before 1am.
If things run normally I will wake up maybe once, and go back to sleep, then wake 7-8hrs later. It even feels like a healthy sleep. But I often feel no better for a "healthy sleep" nowadays
 

lenora

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Hi Wolfcub....I read an interesting report about sleep prior to electricity and in mainly colonial people. Anyway, people would to go to sleep about 9;00 p.m., but awaken for at least 2 hrs. between 1:00 & 3::00 p.m. During that time they would have privacy and do whatever they wanted. Talk, have sex, finish chores....whatever they felt like doing. Perhaps we were never meant to have 8 hrs. straight, I don't know, but do wish it had been brought up in the article.

Maybe we simply try to cram too much sleep in today, although babies and children seem to do just fine with 8 hrs. All of my friends have sleep problems; none as bad as mine, but then they haven't been through what I have. It seems that if it's not one thing you can count on the other.

You're a night owl, just like I am. Funny, I can remember sleeping like a baby in my 20's. It was during my late 20's, early 30's that things went haywire....and then really went crazy after my surgery. Of course that's one of the classic signs of ME and yes, like you, I do believe some of it's hormonal in women.

What do you men have to say about your sleep patterns. It would be nice to know. Yours, Lenora.
 

Wolfcub

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Hi Wolfcub....I read an interesting report about sleep prior to electricity and in mainly colonial people. Anyway, people would to go to sleep about 9;00 p.m., but awaken for at least 2 hrs. between 1:00 & 3::00 p.m. During that time they would have privacy and do whatever they wanted. Talk, have sex, finish chores....whatever they felt like doing. Perhaps we were never meant to have 8 hrs. straight, I don't know, but do wish it had been brought up in the article.
I know. I have read about that "two-phase" sleep. It was quite normal.

I have heard it said that we need as much sleep as it takes for us to feel okay and be active in the day. Some people (healthy people) can be fine on 4 hours. Some need 10. All through no fault of their own, but just they way they are made.

But it doesn't always apply to us. I recall getting wonderful deep restful sleep at the beginning of ME/CFS and still waking up feeling terrible like never before.
 

lenora

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I know. I have read about that "two-phase" sleep. It was quite normal.

I have heard it said that we need as much sleep as it takes for us to feel okay and be active in the day. Some people (healthy people) can be fine on 4 hours. Some need 10. All through no fault of their own, but just they way they are made.

But it doesn't always apply to us. I recall getting wonderful deep restful sleep at the beginning of ME/CFS and still waking up feeling terrible like never before.
Hi Wolfcub.....Yes, I can remember having more sleep at the beginning of this illness. However, it wasn't true sleep....I felt that I could hear everything being said around me (and I could); somehow I couldn't enter a deeper level of sleep. Now I don't know how many people suffer from that, but I've often wondered if it doesn't explain the really bad muscular pain we can have. Things have improved over time....but it has been quite awhile.

My husband requires 8 hrs. at night and wakes up on his own after its over. He falls asleep whenever he feels like it....and I'm so glad that one of us gets decent sleep. How are you feeling? Stronger, I hope. Yours, Lenora.
 
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I now go it alone. Is this more common in women, do you think? I went into menopause at age 40, and I'm still suffering at age 73. I do think hormones have some say in what occurs.
I recall so many nights, of seeing a light outside, milling about, my Landlady, unable to sleep and wandering through the yard with her flashlight.

Menopausal women have considerable trouble sleeping, and it seems older men can sleep anywhere, at any time and for what seems like, most of the time.
 

lenora

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I recall so many nights, of seeing a light outside, milling about, my Landlady, unable to sleep and wandering through the yard with her flashlight.

Menopausal women have considerable trouble sleeping, and it seems older men can sleep anywhere, at any time and for what seems like, most of the time.
Yes, they're still trying to get away from us!!! :)Yours, Lenora
 
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