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Does your ME cause sleep inversion?

Discussion in 'Sleep Disturbance' started by leokitten, Jan 23, 2019.

?

Does your ME cause sleep inversion?

  1. yes

  2. no

Results are only viewable after voting.
  1. Milo

    Milo Senior Member (Voting Rights)

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    I was on sleep meds before onset of ME
     
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  2. leokitten

    leokitten Senior Member (Voting Rights)

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    Trish I don't quite understand the 2nd option?
     
  3. Rosie

    Rosie Senior Member (Voting Rights)

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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.
     
  4. Trish

    Trish Moderator Staff Member

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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?
     
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  5. Rosie

    Rosie Senior Member (Voting Rights)

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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.
     
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  6. Trish

    Trish Moderator Staff Member

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    I'd be seasick in 5 minutes.
     
  7. leokitten

    leokitten Senior Member (Voting Rights)

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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?
     
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  8. Trish

    Trish Moderator Staff Member

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    Exactly!
     
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  9. leokitten

    leokitten Senior Member (Voting Rights)

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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?
     
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  10. Rosie

    Rosie Senior Member (Voting Rights)

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    I think a separate poll.
     
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  11. leokitten

    leokitten Senior Member (Voting Rights)

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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
     
  12. leokitten

    leokitten Senior Member (Voting Rights)

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    Sorry I changed "increasing" to "adding" as I think that is clearer
     
  13. Trish

    Trish Moderator Staff Member

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    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.
     
  14. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    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.
     
    Last edited: Jan 25, 2019
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  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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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.)
     
    Last edited: Jan 26, 2019
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  16. Ravn

    Ravn Senior Member (Voting Rights)

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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:
    https://vestibular.org/news/06-18-2013/new-views-motion-sickness

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

    Ravn Senior Member (Voting Rights)

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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.
     
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  18. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    The same here.

    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.
     
  19. leokitten

    leokitten Senior Member (Voting Rights)

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  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    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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