Does your ME cause sleep inversion?

[AliceLily]

I almost always crash hard at the end of that with a severe worsening of all my symptoms especially neurological ones, including not understanding what is going on around me, unintelligible speech, agitation, balance issues and strong light and noise sensitivity

Yes, same with me.

Have you experienced the level where you start retching and being sick as if poisioned? The weakness is even worse with this, you can't eat even though your stomach is rumbling with hunger, also you get diarrhoea with it. I get this one with accumulated PEM. The last time I had this my mother was in hospital and I was having to visit her nearly every day.

 

[Alvin]

I have non 24 hour circadian rhythm disorder, likely caused by ME, as it gets worse the body clock gets worse.
Before my ME was diagnosed i did a bunch of sleep studies, they kept telling me i had delayed sleep phase syndrome.
Form questions i have asked in other threads it seems sleep timing as well as poor sleep quality issues are common in ME

DSPS is a late sleep time thats stable but very delayed.
Non 24 is always moving sleep time or random throughout the day/night sleep times that are not one logn stretch.
In classical DSPS the treatments are blue light glasses or artificial light avoidance, melatonin and full spectrum light
In non 24 the same.

Neither of these work for ME since our causes are not the same.
DSPS is traditionally caused by sensitivity to blue light in the evening.
Non 24 is traditionally caused by eye damage (common in the blind, rare but found in the sighted) or genetic.

Our issues are somehow caused by ME do while the symptoms look similar on the surface the treatments typically don't work.

If you could sleep whenever you want for a couple weeks how would things settle if you didn't push on them?

 

[Inara]

Read the James L Wilson book Adrenal Fatigue which helps understand this enormously.

"What Is It?
The term "adrenal fatigue" was coined in 1998 by James Wilson, PhD, a naturopath and expert in alternative medicine. He describes it as a "group of related signs and symptoms (a syndrome) that results when the adrenal glands function below the necessary level." He says it’s usually associated with intense stress and often follows chronic infections like bronchitis, flu, or pneumonia...."

Although I'm not the adrenal fatigue believer (to be honest...although I do think adrenal glands can exhaust, but not in the way it's talked about in adrenal fatigue), I do have low cortisol levels in the evening/at night (over the day they are low-ish, too), and I hypothesize that my "kick" in the evenings may be due to adrenaline, which leads to problems with going to sleep. Just my thoughts, and not confirmed (apart from the cortisol).

 

[leokitten]

Yes, same with me.

Have you experienced the level where you start retching and being sick as if poisioned? The weakness is even worse with this, you can't eat even though your stomach is rumbling with hunger, also you get diarrhoea with it. I get this one with accumulated PEM. The last time I had this my mother was in hospital and I was having to visit her nearly every day.

ME has generally made me feel like I’ve been poisoned, just an overall disgusting feeling and my body telling me it is very sick. I used to get acute nausea and vomiting during the first year but as the disease moved into the chronic phase it happened less and less.

Being on keto diet helped with many symptoms, including the poisoned feeling which has improved. But with constant exertion the diet seems to have no effect on some big symptoms like the sleep inversion and related issues.

 

[alex3619]

If you could sleep whenever you want for a couple weeks how would things settle if you didn't push on them?

I have been doing this for many years. It did NOT settle. Sleep keeps moving. However sleep quality vastly improved for me. On some occasions I have lost all circadian rhythm, and moved to napping several times a day with no pattern. This does not last though. I have been able to improve my sleep by eating Brazil nuts if I am not able to sleep enough. These supply, at least, selenium and quality omega 6 fats, both of which are needed, indirectly and directly, on the path to PGD2, which is absolutely required for sleep. Without this hormone the brain cannot go quiet. Its literally impossible, though you can fall unconscious, but that is not sleep.

Our issues are somehow caused by ME do while the symptoms look similar on the surface the treatments typically don't work.

I am not convinced that non 24 is typically treatable at all. Some treatments work for a while, but this does not last. As you point out, the problem in ME is likely not any of the same problems doctors are used to treating.

The prototypical disease with sleep inversion is African Sleeping Sickness, and this is the disease with the closest expressed RNA signature to ME according to Ron Davis. It is not likely we have a trypanosome infection though.

A recent New Zealand study also showed over-expression of Per1 in peripheral white blood cells, which is one of the circadian clock genes.

A lot of us, including my subgroup of encephalitis survivors, may have diffuse damage to much of the brain.

ME sleep inversion needs research all of its own, on CCC or ICC ME patients.

 

[Alvin]

I have been doing this for many years. It did NOT settle. Sleep keeps moving. However sleep quality vastly improved for me. On some occasions I have lost all circadian rhythm, and moved to napping several times a day with no pattern. This does not last though.

I have severe non 24, i sleep for 9-11 hour stretches but it moves forward currently about an hour a day. I used to be at 2 hours a month 3 or 4 years ago. I use melatonin which only helps sleep initiation and not timing and the blue light glasses and bright light do nothing for me.
If i stopped the melatonin i don't think i would be sleeping in any controlled manner at all.
I've driven my current neurologist half crazy and broken many others by their inability to affect sleep issues in ME.
When we have an ME treatment we will find out if my non 24 is ME induced which i highly suspect it is but can't at the moment prove.

I have been able to improve my sleep by eating Brazil nuts if I am not able to sleep enough. These supply, at least, selenium and quality omega 6 fats, both of which are needed, indirectly and directly, on the path to PGD2, which is absolutely required for sleep. Without this hormone the brain cannot go quiet. Its literally impossible, though you can fall unconscious, but that is not sleep.

Sleep is incredibly complicated, while we have come far from the days where they didn't want to waste paper doing EEGs while people were unconscious assuming sleep had no biological activity we have only really scratched the surface.

I am not convinced that non 24 is typically treatable at all. Some treatments work for a while, but this does not last. As you point out, the problem in ME is likely not any of the same problems doctors are used to treating.

It depends on the cause.
For the blind who don't have the receptors in their eyes to set their circadian time by bright light melatonin usually works insanely well. Interestingly some blind people still have the active circadian setting cells since they are a separate receptor not involved in vision.
For those who are not blind but have damage to the receptors in the eyes that set circadian rhythms melatonin also usually works well
For those who have a genetic cause it can work for some and not for others.
In ME from my experience and what i have read on the boards and questions i've asked and polls i started none of the gold standard treatments do diddly squat.

ME sleep inversion needs research all of its own, on CCC or ICC ME patients.

It certainly does

 

[alex3619]

One of the concerns I have is that polls like this are highly misleading, though I think someone can create a poll to fix the main problem.

Over the years I have asked these questions many times. I rarely hear about sleep inversion before three years of illness, and almost always hear about it after ten years. Is this something that comes on slowly? Can someone create a new poll that includes age of onset up to over ten years, year by year, and the same for no onset?

 

[leokitten]

One of the concerns I have is that polls like this are highly misleading, though I think someone can create a poll to fix the main problem.

Over the years I have asked these questions many times. I rarely hear about sleep inversion before three years of illness, and almost always hear about it after ten years. Is this something that comes on slowly? Can someone create a new poll that includes age of onset up to over ten years, year by year, and the same for no onset?

It’s not just age of onset, I found there is also a limitation in my poll based on some of the responses in this thread, where people didn’t know whether to put yes or no if they only had it only sometimes, or for a variety of other reasons listed here.

Maybe we should create another poll, but there is also a limitation of all polls that to truly be as accurate as possible you need to give so many detailed options to choose from to cover enough dimensions.

 

[leokitten]

I rarely hear about sleep inversion before three years of illness, and almost always hear about it after ten years. Is this something that comes on slowly?

To give you my data point, I had a significant change in my ability to sleep at about a year or more BEFORE getting sudden onset ME (though not inversion), where I slept like a baby my entire life before that. After sudden onset, I went through an initial period of hypersomnia for 8 or 9 months which then quickly flipped to insomnia, sleep inversion, and all the symptoms I described in my OP.

Polls could always be improved, we should all take their results with a grain of salt when they are done ad hoc like this on a patient community forum.

I can tell you my reason for doing this poll is because when I searched I couldn’t find any thread on it on S4ME and one old one I believe on PR. Plus I wanted to read people’s stories and their testimonials

 

[Little Bluestem]

My ME caused delayed sleep phase. The melatonin I took to try to fix that caused the inverted sleep.

 

[Milo]

I am not sure whether to answer yes or no. I usually sleep from 1-2 AM till 12-1 PM. With the help of sleep medication. No meds, no sleep.

 

[Peter T]

Over the years I have asked these questions many times. I rarely hear about sleep inversion before three years of illness, and almost always hear about it after ten years. Is this something that comes on slowly? Can someone create a new poll that includes age of onset up to over ten years, year by year, and the same for no onset?

For me in the early years post onset, I was still working so I had no choice but to leave the house at 8am and keep going through the day, also I had 'hypersomnia' rather than 'hyposonia' so was sleeping every free moment, so if you are sleeping twelve or more hours a day, using every free moment for sleep, would you know if you had sleep inversion or not?

However I agree that studying the changes in sleep patterns over the course of our disease is important. Personally I find that hypersomnia is a feature of the onset and major relapses in my ME, but hyposomnia or insomnia on an ongoing basis is a feature of PEM or crashes.

Having said that when I have kept detailed activity records, though there have been periods of increased sleeping, if I allow myself to nap, when my sleep patterns are disturbed, I am still getting 7 or 8 hours a day sleep, just not necessarily in one go or at night.

What ideally are the dimensions we would need to measure to understand variation in sleep between individuals and within individuals over time:

• Total duration of sleep
• Pattern of sleep
• Types of sleep (deep, REM, etc)
• Refreshingness of sleep
• Activity context (what we are doing when not sleeping or trying to sleep)
• ?

It has often puzzled me that very occasionally I can wake feeling well, feeling I have had a good refreshing night's sleep. But I have no idea what happened to mark those occasions as different. I used jump out of bed taking this as a signal to attempt all the things currently on the to do list, invariably a mistake. Now I just enjoy the moment, know it will not last.

More generally now I feel 'worse' when I wake up and in a morning it takes several hours to get going.

I have a cat with a very strong devotion to her circadian rhythms, and so I have to feed her between 8 and 9am every morning. At the same time I bring in the milk (still have deliveries here) and take the cat into the garden as she is blind so needs monitoring outside. At present (last year or so), when I go back to bed I feel very cold (regardless of the actual temperature), rather like the feeling I would have got, pre ME, when getting up in the middle of the night to go on a journey. It will take a while to warm up, and I need a couple of hours rest or even a nap before trying to do anything else.

 

[Ravn]

Maybe we should all try to sleep in a hammock, or a fancy automated rocking bed once they become more widely available (the latter most likely only an option for millionaires). I did use to sleep particularly well on trains, back in the days I could still travel...

See this small study on healthy sleepers but still interesting especially because some of the positive results were falling asleep more quickly and increased deep sleep.

Whole-Night Continuous Rocking Entrains Spontaneous Neural Oscillations with Benefits for Sleep and Memory, by Perrault et al published in Current Biology on 24 January 2019

Sensory processing continues during sleep and can influence brain oscillations. We previously showed that a gentle rocking stimulation (0.25 Hz), during an afternoon nap, facilitates wake-sleep transition and boosts endogenous brain oscillations (i.e., EEG spindles and slow oscillations [SOs]). Here, we tested the hypothesis that the rhythmic rocking stimulation synchronizes sleep oscillations, a neurophysiological mechanism referred to as “neural entrainment.” We analyzed EEG brain responses related to the stimulation recorded from 18 participants while they had a full night of sleep on a rocking bed. Moreover, because sleep oscillations are considered of critical relevance for memory processes, we also investigated whether rocking influences overnight declarative memory consolidation. We first show that, compared to a stationary night, continuous rocking shortened the latency to non-REM (NREM) sleep and strengthened sleep maintenance, as indexed by increased NREM stage 3 (N3) duration and fewer arousals. These beneficial effects were paralleled by an increase in SOs and in slow and fast spindles during N3, without affecting the physiological SO-spindle phase coupling. We then confirm that, during the rocking night, overnight memory consolidation was enhanced and also correlated with the increase in fast spindles, whose co-occurrence with the SO up-state is considered to foster cortical synaptic plasticity. Finally, supporting the hypothesis that a rhythmic stimulation entrains sleep oscillations, we report a temporal clustering of spindles and SOs relative to the rocking cycle. Altogether, these findings demonstrate that a continuous rocking stimulation strengthens deep sleep via the neural entrainment of intrinsic sleep oscillations.

https://www.cell.com/current-biology/fulltext/S0960-9822(18)31662-2

 

[leokitten]

I am not sure whether to answer yes or no. I usually sleep from 1-2 AM till 12-1 PM. With the help of sleep medication. No meds, no sleep.

Wouldn't you eventually fall asleep with no meds? (like I do?) I doubt ME sleep issues would keep your body awake indefinitely? Also, how much are you exerting? If you increase your exertion do you still sleep at those times and do meds still work, or does it make it worse?

You symptoms sound somewhat like mine if I were to reduce exertion and not have to work part-time.

 

[Milo]

Wouldn't you eventually fall asleep with no meds? (like I do?) I doubt ME sleep issues would keep your body awake indefinitely? Also, how much are you exerting? If you increase your exertion do you still sleep at those times and do meds still work?

In my case, exertion does not lead to sleepiness and sleep. Exertion leads to PEM. PEM means for me worsened sleep quality even if i took my sleeping meds.

Every time I could not fall asleep and found myself still awake at 4, 5 AM was because i forgot to take my night time pills. It happens once in a while.

 

[leokitten]

In my case, exertion does not lead to sleepiness and sleep. Exertion leads to PEM. PEM means for me worsened sleep quality even if i took my sleeping meds

@Milo this is exactly the same as me as described in my OP. Exertion leads to PEM and part of PEM is a cluster of nighttime symptoms including wired feeling, gut irritation, etc causing me not to be able to sleep all night until I eventually fall asleep from exhaustion during the next day or sometimes not at all until the second day. Also, like you with more exertion and PEM these symptoms worsen and sleep meds either don't work at all or I need to drastically increase dosage to knock me out.

Every time I could not fall asleep and found myself still awake at 4, 5 AM was because i forgot to take my night time pills. It happens once in a while.

But if you don't take your meds do you eventually fall asleep the next day? If you didn't take your meds at all wouldn't this eventually causes at least a bit of sleep inversion?

 

[Milo]

@Milo
But if you don't take your meds do you eventually fall asleep the next day? If you didn't take your meds at all wouldn't this eventually causes at least a bit of sleep inversion?

Probably this would be the case but it’s not something i am keen to volunteer on. i was a nurse before I got sick and a large portion of my nursing career involved working rotating shifts. There is nothing worse than being sleep deprived even as a healthy person.

These days with short daylight time at least here in Canada, waking up at 12or 1 PM means out of bed by 2 and I dislike that i don’t get much time in daylight hours. Thankfully we are headed towards spring.

 

[leokitten]

What does everyone think about this new poll. I want to keep things simple yet look it from a slightly different perspective. Also, one thing that is hard to gauge is that once people have been on sleep meds for a while your body becomes dependent on them to sleep, and I want to know more about the disease causing an inability to fall asleep at a normal time naturally. I guess people should answer the poll based on how things were before they started meds or if they were off of them enough time to gauge how the disease directly affects ability to fall asleep at night naturally.

Does your ME cause problems with falling asleep at night at a normal time? (Without assistance sleep meds)

- Yes, regardless of prior exertion
- Yes, only if significant enough prior exertion
- Occasionally
- No

 

[leokitten]

Probably this would be the case but it’s not something i am keen to volunteer on. i was a nurse before I got sick and a large portion of my nursing career involved working rotating shifts. There is nothing worse than being sleep deprived even as a healthy person.

Sorry didn't imply that you should do the experiment, but if you remember how it was like with ME and sleep before you ever did meds or if you took an extended break at one time and could gauge it.

 

[Trish]

I found it hard to choose between your first two, so I've suggested adding another option.

Does your ME cause problems with falling asleep at night at a normal time? (Without assistance sleep meds)

- Yes, regardless of prior exertion
- Yes most of the time, and significantly worse after exertion
- Yes, only if significant enough prior exertion
- Occasionally
- No