Does your ME cause sleep inversion?

Does your ME cause sleep inversion?

  • yes

  • no

Results are only viewable after voting.
Trish said:
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
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Trish I don't quite understand the 2nd option?
 
leokitten said:
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
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I'd be interested to know what level of ME the sleep problems began. For me, I can't remember noticing sleep problems in the early years of ME onset. It was only when I reached severe/very severe.
 
leokitten said:
Trish I don't quite understand the 2nd option?
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Sorry, @leokitten, I'm not surprised, I'm not quite with it today after all yesterday's parliamentary excitements.

I guess I was trying to cover my own case where I have more difficulty falling asleep (and staying asleep) since ME started - taking an hour or two to fall asleep compared to a few minutes. But it's particularly bad on days when I've been more physically or mentally active (I can be awake all or most of the night).

Does that make sense?
 
Ravn said:
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...
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@Ravn I can't bear rocking or any kind of movement like that. I caught a train to downtown a few weeks ago, it took just under 15 minutes to get there, the swaying was very unpleasant and I wouldn't want to do a longer trip.
 
Trish said:
Sorry, @leokitten, I'm not surprised, I'm not quite with it today after all yesterday's parliamentary excitements.

I guess I was trying to cover my own case where I have more difficulty falling asleep (and staying asleep) since ME started - taking an hour or two to fall asleep compared to a few minutes. But it's particularly bad on days when I've been more physically or mentally active (I can be awake all or most of the night).

Does that make sense?
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I see, so you mean a combo of the other Yeses. You have difficulty even with no exertion and also it's even worse after exertion?
 
Rosie said:
I'd be interested to know what level of ME the sleep problems began. For me, I can't remember noticing sleep problems in the early years of ME onset. It was only when I reached severe/very severe.
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I think for simplicity do you think this would work as a separate poll? Or are both dimensions important to put together in a single?
 
Trish said:
Exactly!
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How about this. I know it's long but I hope it can capture it since I want only a single choice poll, to avoid people pick two conflicting options.

- Always/most of the time, regardless of prior exertion, and adding exertion makes it worse
- Always/most of the time, regardless of prior exertion, though adding exertion does not make it worse
- Always/most of the time, only with significant enough prior exertion, and adding exertion makes it worse
- Always/most of the time, only with significant enough prior exertion, though adding exertion does not make it worse
- Occasionally
- No
 
leokitten said:
How about this. I know it's long but I hope it can capture it since I want only a single choice poll, to avoid people pick two conflicting options.

- Always/most of the time, regardless of prior exertion, and adding exertion makes it worse
- Always/most of the time, regardless of prior exertion, though adding exertion does not make it worse
- Always/most of the time, only with significant enough prior exertion, and adding exertion makes it worse
- Always/most of the time, only with significant enough prior exertion, though adding exertion does not make it worse
- Occasionally
- No
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Sorry I changed "increasing" to "adding" as I think that is clearer
 
I'm in favour of as few words as possible.

Do you have more difficulty falling asleep since you got ME?
1. Yes. Equally bad regardless of exertion
2. Yes. Worse after exertion.
3. No when well rested but yes after exertion.
4. No. No change or only occasionally worse.
5. No, I fall asleep more easily.

Edit. But it's your survey. This is just a suggestion.
 
The new poll sounds like it includes we natural night owls.

In my family we joke about the 'crack of noon'.

ME has exaggerated our natural tendency to fall asleep later and mornings are even worse. We didn't turn into larks.

We are all more active at night and think better. Exertion does rob us of this and early starts leave us with no good period during the day.
 
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Just had the thought that, though sleep disturbances are a regular feature of ME, I don't think I recall anyone mentioning any issues arround dreams or dreaming.

Personally I rarely remember any dreams and those that I do are not about recent events or my current life, and that has not significantly changed since the onset of my ME. However, for the first time, it occurred to me to wonder if that was odd, given that in the last twenty six or seven years I have experienced most possible variations of hypersomnia and insomnia.

Just now I awoke during a dream, I was dreaming that trip switch had gone, which had in real life happened a few days ago, and the lights were off. Going through the darkened house in the dream to find the fuse board, I came across an intruder who attacked me. I tried to hit them in the dream, but the mechanism that holds us in paralysis during dreams failed and I hit out in real life against the bed head, fortunately my hand must have been under the pillow as my punch took the pillow with it, meaning I punched the pillow against the wooden slats, protecting me from hurt. I assume this action is what woke me. The emotional disturbance of the dream persisted for a short while into waking until I got my head arround there was not an intruder in real life. It was the unusualness of this, and that at the point of awakening I was partially enacting my dream, got me wondering why it is not generally an issue.

At the times when ME related 'dyssomnia' causes waking once asleep, trouble staying asleep, you might expect us to remember more dreams. When people are trying to learn to remember more dreams one of the strategies they use is to set an alarum clock to wake them at regular intervals during the night.

However for me when I am having trouble staying asleep, I do not seem to remember more dreams than at other times, suggesting that the awakening is not happening randomly, that I am not usually waking during REM sleep.

Is my lack of any dream involvement a feature of ME related dyssomnia for other people too?

The full cannon of sleep phenomenon can involve being more aware of dreams, having very vivid dreams, sleep walking and even acting out dreams, but I don't recall any mention of any of these in any forum discussions on ME and sleep.

(Perhaps I do experience slightly more vivid or upsetting dreams during migraines, if I am able to get to sleep, though I can not be certain of this. For me migraines can either be a symptom of food intolerances or PEM, but I don't know if that has any bearing on the issue of more vivid dreams.)
 
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Rosie said:
I can't bear rocking or any kind of movement like that.
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Trish said:
I'd be seasick in 5 minutes.
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Yeah, I was wondering about that, too. I used to be completely impervious to motion sickness, not any more.

The interesting thing is that the very mechanisms the sleep study hypothesises cause the benefits of rocking to healthy people's sleep are the same mechanisms thought to cause motion sickness. It's the first time I've heard about a possible link between the vestibular system and sleep but I see there are several studies referenced looking at precisely that (I haven't looked at them).

Motion sickness:
Part of the difficulty with devising treatments is that experts don't know exactly what causes motion sickness. The prevailing belief is it is caused by a sensory mismatch between the visual and vestibular systems. The vestibular system, which is part of the inner ear, monitors movement and helps control balance.[...]

Another theory is that body sway, or the change in a person's movements over short time intervals, can explain a propensity to get motion sickness. In Tom Stoffregen's lab at the University of Minnesota, the kinesiology professor measures each subject's body sway over a short period. He has found that individuals who are more susceptible have a more-erratic sway during and even before they are exposed to any stimulation.
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https://vestibular.org/news/06-18-2013/new-views-motion-sickness

Sleep:
How can we explain that rocking impacted the sleep architecture and related-brain oscillations? While the exact underlying neuronal mechanism cannot be fully elucidated here, we hypothesize that the rocking effect would be driven by the vestibular system. We demonstrated the validity of this hypothesis in the companion study, based on an animal model [36]. This animal study further suggested that rhythmic vestibular stimulation would act on sleep architecture and associated oscillatory patterns by means of cholinergic tonus modulation. We can only speculate that a similar cholinergic mechanism is involved in human scalp EEG studies [37]. This latter hypothesis is highly interesting given the influence of the cholinergic system on the regulation of sleep [38, 39, 40]. Here, we provide initial evidence for an effect of the external sensory signal (vestibular and possibly proprioceptive stimulation at 0.25 Hz) on the synchrony of thalamocortical oscillations during NREM sleep.
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https://www.cell.com/current-biology/fulltext/S0960-9822(18)31662-2
 
Peter Trewhitt said:
However for me when I am having trouble staying asleep, I do not seem to remember more dreams than at other times, suggesting that the awakening is not happening randomly, that I am not usually waking during REM sleep.
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Opposite for me, I always seem to be waking up out of a dream, no matter how many times a night I wake up. The dreams themselves are just normal though, no more vivid or anything.
 
Peter Trewhitt said:
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.
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The same here.

Ravn said:
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...
Click to expand...
I too loved to sleep on trains. When I lived in a hot climate, I slept in a hammock on a screened porch. I loved to push against the wall and make the hammock swing. I wished that someone made a mechanism that would make the hammock rock all night.

I dream a lot during the night. I have read that people just think that they dream a lot because most of the dreaming occurs late in the night, prior to waking. My bladder gets me up regularly during the night and every time I wake up I have been dreaming. The dreams do not have a sensible plot line and are difficult to remember. I think they are the reason I usually wake with a head-ache.
 
Hi all,

Just wanted to post something on this topic that going on for me right now.

I have been having worse sleep than usual sometimes up for 36 hours then getting fitful sleep for a few days following then crash sleep for 14+ finally days after and still feeling awful.

For years I have known about melatonin but have never used it heeding the warnings that I would read when researching on the subject. But I was so desperate after this recent and continued cycle that I asked hubby to get some melatonin at the weekend.

Only three days in but it seems to be working now instead of anywhere from 3-6AM bedtime (sometimes getting up after 4 hours and not yet asleep) I have so far gone to bed at mid-night and up at 9:30-10:00 AM.
I still wake up briefly a few times in the night.

One thing though that may be different for me and thus a reason for melatonin working (this is speculation on my part) is that I grew up taking phenobarbital all through childhood for my epilepsy. I sometimes wonder if it's actually this that is in part responsible for some of my symptoms (like the cognitive issues I have).

I'm hoping that the pills will continue to work. I have a 3mg pill and I have started with half that and have now taken a 3mg dose which has not left me with feeling groggy as some information has suggested happens when melatonin is actually not needed but I do wake with a mild headache so I will continue to monitor my dose. Some websites have suggested .3mg is a proper dose so I don't know what's going on. I hope to use it short term and then see how it goes.
 
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