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Sleep making symptoms worse

Discussion in 'Sleep Disturbance' started by borko2100, Jun 3, 2019.

  1. borko2100

    borko2100 Established Member (Voting Rights)

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    So first of all, let's describe what I am talking about. Basically, I've noticed this pattern:

    The deeper and longer I sleep the worse I will feel. If I have poor / broken sleep or sleep for a very short time (< 5 hours) my symptoms are greatly reduced. When I sleep well or long I get symptoms like: increased fatigue, arm weakness and pain, diziness, sleepiness (paradoxically enough), etc. If I sleep bad, many of those are eliminated or greatly reduced. On a few occasions, when I had slept for only 2-3 hours I even had a remission like feeling for an hour or two!

    The obvious question is, why dont you sleep 5 hours every day then?

    Once I've fallen into a deep sleep it's extremely difficult to wake up. So even if I set my alarm 5 hours after bed time, the urge to continue sleeping will be too great and I might just turn it off. Even if I somehow manage to get up, I would be so sleepy that after an hour or two I would give up and go back to bed. If I sleep lightly / badly then this becomes much easier, unfortunately I have no control over, whether I sleep deeply or lightly during the night.

    Interestingly, this all started 2 years ago, after a severe crash, before that I always had unbroken 9-10 hour long sleep, which didnt correlate with symptoms.

    I've heard of quite a few other people who have the exact same symptom. Which seems very intriguing. Considering how specific and rare this symptom is, it could possibily provide insights into the disease process behind CFS/ME for some sub-group of patients.

    I did some research to see if this symptom occurs in other illnesses, but couldn't find much. One thing popped up though: sleep deprivation therapy seems to be very effective in curing depression! I am pretty sure this doesn't apply to me though, considering the plethora of neurological symptoms I have (arm and muscle weakness, parasthesias, POTS, diziness, overactive bladder, etc.), which rarely or never occur in depression.

    Does anyone else have this symptom? And does anyone have a hypothesis, behind what causes it?

    I have a hypothesis of my own, which is related to the findings of mr. Younger. He found increased neuroinflamation in ME/CFS patients. My hypothesis is that, deep sleep somehow further increases neuroinflamation, thus making symptoms worse.

    I feel that, if many other patients have this symptom, a study would be warranted. There are many things that could be researched, among others: first of all confirm that sleep deprivation indeed improves symptoms, then measure levels of neuroinflamation, see if it correlates with deep sleep, then measure other variables to see how sleep deprivation affects them, etc.
     
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  2. Trish

    Trish Moderator Staff Member

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    The thing that occurs to me to ask is whether you have ever slept for only a few hours for many nights in a row, and if so whether the 'good' feeling persists.

    The reason I ask is that I often sleep badly and am no worse than usual the following day (though not improved as you describe). I tend to think of this as 'tired but wired' and guess (and it's only a guess) might relate to too much adrenaline keeping my mind buzzing. And maybe that buzzing keeps me going the next day, giving a false sense of having more energy.

    So I might have a few days of this where I seem to both sleep badly have a bit of extra energy.

    Then I have a night with more sleep and wake up feeling drugged and slow and awful. But maybe that isn't the longer sleep causing this worsening, but the longer sleep and the worsening both being PEM after the more active days.

    I wonder if this rather muddled description makes any sense to anyone. I'm not even sure it makes sense to me.
     
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    I think if I’ve only had a few hours sleep I tend to be running more on adrenaline especially if I have something to do that day. I used to have very little sleep and still get up and travel down to London and do long meetings and travel home again out of the house 13 hours. I think it’s unsurprising to feel worse after being sleep deprived then knocked out by a “catchup” night because all the cumulative effects of the previous nights are hitting rather than being due to the long sleep. The adrenaline after the short nights is masking the effects of not enough sleep. In my opinion anyway

    ETA similar to what @Trish said sorry for repetition
    ETA 2 based on limited reading deep sleep is when a lot of the deep cleaning work goes on in the brain so should be a positive rather than a negative
     
  4. Hopeful1976

    Hopeful1976 Established Member

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    I definitely see this correlation - long and deep sleep where I feel so fatigued on waking = more severe symptoms. Less sleep/broken = less severe. Its v odd. Where I used to feel worried at lack of sleep, I now welcome it as it more often than not signifies a good spell is on it's way. I wonder if the metabolic trap can answer this strange anomaly?
     
  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    @borko2100 is this improvement after a bad night’s sleep and deterioration after a good night’s sleep for the whole day or just at first in the morning?

    I could relate if it was just the first few hours of the day. When I wake in the morning after a deep sleep I can feel awful and need to rest for several hours before I am well enough to attempt anything, but this is less so after a disturbed or sleepless night. However, by later in the day the tiredness will start to kick in after a poor night’s sleep, whereas if there is any benefit it may not be apparent until later in the day after a good night’s sleep. I have perceived it as a struggle to come round from deeper sleep rather than symptoms being reduced by poor sleep, longer term, hours and days, I would see my symptoms being made worse by repeated bad nights.

    However this is presumably not what you are describing. Presumably we have yet another example of the variability of our condition.

    Hopefully when we know what the significant variables are the more sense we will be able to make of this. At different times over the course of my illness specific ideas have helped me make sense of what is happening to me.
    • The first was the idea of delayed PEM, that I may not experience the negative consequences of exertion till a day or more later or that my symptoms could continue to worse then for several days. So when foolishly cutting the lawn on Saturday afternoon and collapsing immediately afterwards, I now know waking up feeling OKish on Sunday morning, does not mean I got away with it longer term and I still need to be ready for the inevitable crash on Sunday afternoon.
    • For me next was the possibility that food intolerances could have a delayed impact, for example I get a migraine almost exactly 24 hours after eating gluten so took a number of years to spot the pattern and realise I was gluten intolerant. This gap between cause and effect may make it hard for us to spot a causal relationship.
    • The third is the idea of orthostatic intolerance, I had previously just assumed that doing anything not lying down just involved more exertion, therefor was more likely to trigger PEM. However it was only when I realised that being upright in itself is a limiting factor on what I am able to do independent of the amount of exertion involved. So there are two things to consider amount of time upright and the amount of exertion when evaluating what I can attempt without over doing it.
     
  6. borko2100

    borko2100 Established Member (Voting Rights)

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    @Trish Yes it usually persists. I could get benefits a few days in a row. Eventually though, the sleep debt stacks up and I have to sleep for 10-12 hours in one go, wether I want it or not. Basically, many ME symptoms are greatly reduced, but I still feel sleep deprived, so it is not sustainable long term. Also, having a nap during the day seems to somewhat make symptoms worse again.

    It is critical to note that the opposite effect is very strong as well. If I sleep for too long (> 10 hours) my symptoms are greatly increased. I experience very severe fatigue and muscle weakness, that I usually don't get. Those days I usually just sit on the couch all day, and have to nap or lay down several times. An average day is much better, I am still mostly on the couch and need a nap, but I have enough energy to go outside or do some housework.

    I regularly do 1 to 3 day water fasts. An interesting effect of water fasting, is that it makes you unable to sleep. This happens to healthy people as well. When doing a 3 day fast, I am usually not able to sleep more than 3 hours on the 2nd and 3rd day, this is when I get great improvement of symptoms. This is also prompted me to make the connection between sleeping little and improved symptoms.

    I want to note also that, in order to get the effects, the sleep needs to be really broken or really short. So if you are wondering if this helps you, try expermeting by sleeping only 3 or 4 hours.

    @"Peter Trewhitt" I usually get the benefits for the whole day. Some of those can be undone if I am too sleepy and take long nap though. You are right, there is just so much variability.

    @NelliePledge your idea seems quite logical. Increased adernaline (or other hormones, like cortisol) could be a very simple explanation as to why the symptoms improve. If this is the case, then just administering those hormones could yield similar benefits. However this is just speculation, more research is needed.
     
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  7. Trish

    Trish Moderator Staff Member

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    Another question if you don't mind. Could it be the fasting rather than the lack of sleep that is temporarily alleviating symptoms?
     
  8. borko2100

    borko2100 Established Member (Voting Rights)

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    It happens whether I am fasting or not. It was a coincidence, that this happened during fasting, simply because fasting makes you unable to sleep. Now of course, fasting has other benefits as well. I would recommend it as well to anyone who can try it (it's not easy).
     
  9. Trish

    Trish Moderator Staff Member

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    Thanks for clarifying. But I think we need to avoid recommending fasting. What helps one person may harm another.
     
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  10. NelliePledge

    NelliePledge Moderator Staff Member

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    @borko2100 i wouldn’t want to use stimulants as my experience with adrenaline nowadays is that it tips from a temporary boost into overload PEM making neuropathic pain the worst I have it and giving me the internal shaking which I only get at my worst. I can’t cope with caffeine at all either. For me stimulants would be counterproductive.
     
  11. borko2100

    borko2100 Established Member (Voting Rights)

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    Yes, same here, stimulants do not work for me at all. If I drink coffee or energy drinks, I get severe anxiety, dizziniess and bladder issues. In other words it makes my dysautonomia much worse. Which goes to show that there is something quite wrong with my ANS.
     
  12. Kitty

    Kitty Senior Member (Voting Rights)

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    I experience this symptom too, very much as others have described. I can sustain it for several days, and if the amount of sleep is just right (which is difficult to gauge because it tends to change), I can do so for an extended period.

    I also feel at my best during the afternoon and evening – the further away I get from my last period of sleep, the better I feel. When I was still trying to do a few hours of freelance work, I'd often start as late as 9pm and go through until about 1am. It's by far my most productive period (and why I'm on the forum now, at coming up to 11pm!)
     
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  13. Smoo2

    Smoo2 New Member

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    I have this symptom too - feel awake after 6 hours sleep but exhausted later in day, and exhausted after extra sleep in the morning but fine later.
     
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  14. borko2100

    borko2100 Established Member (Voting Rights)

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    This describes me perfectly! The difference can be dramatic. For me it happens 12 to 13 hours after waking up, I get more energy out of nowhere, feel less pain and neurologic symptoms and better mood as well. It's very strange and I have no explanation for it. Interesting how we both have the 'longer sleep -> more symptoms' and also 'longer awake -> less symptoms' correlations, we probably are in a similar subset / have similar disease process.

    All the hype around the CCI thing made me think though. What if sleeping makes us worse and being awake better, because during sleep the head is in a certain position that exacerbates a possibile structural issue?

    So the only way to test if this is true, is to sleep with your head upright. I have plans to try this out very soon, but idk if I will manage it. I dont know if I can fall asleep like this and also I have to figure out a way to keep my head fixed while sleeping that way.
     
  15. NelliePledge

    NelliePledge Moderator Staff Member

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    When I was undiagnosed I used to go for days with very little sleep then I would spend the weekend in bed crashed out. Eventually I had to use caffeine to keep going. Then I would regularly be ill with a viral infection which I now consider to be a flare up of ME. In my experience sleep deprivation adrenaline and caffeine only results in pushing through and a period of much worse symptoms. I use melatonin which helps me get off to sleep rather than sedating medications. When I get PEM I get very tired but wired and don’t sleep until 6am whatever I’ve taken to try to help me sleep. I think overall I’m still probably not getting enough sleep. I wish I could get more sleep. I do feel worse in the morning but I just can’t relate that to it being sleep that is making me feel worse. For one thing When I first wake up painkillers have worn off so I need to take some and wait for them to kick in. Whereas obviously if you only sleep a few hours painkillers can still be working when you wake up.
     
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  16. Annamaria

    Annamaria Senior Member (Voting Rights)

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    Me too.
     
  17. JES

    JES Senior Member (Voting Rights)

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    Hm that's an interesting new way to look at it, I never thought about this possibility. I experience the same issue with more than ~6 hours of sleep making symptoms worse and symptoms typically improving late in the evening, so looking forward to hearing about your results.
     
  18. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I'm best in the afternoons and evenings. Dread going to bed as I know I will feel terrible the next morning. It's as if "something" resets over night.

    If my sleep is conventionaly "bad" or broken I feel better the next day and it lasts the entire day. Needs to be a particular type of broken though that doesn't involve exertion for me.

    So as an example a night of intermittent loud wakening type noise from the wind but not investigating a fire alarm at the house next to me.

    My guess is that it has something to do with cortisol. My blood and saliva test shows low cortisol in the mornings. Could be something entirely different of course as I have very few useful tests that could explain anything.

    It's not head related for me as I've had periods of time sleeping upright due to sinus infections and also the "bad" nights sleep can occur with my lying flat.

    One thing I did notice was that previously my body temperature is low in the mornings and higher at night. Been meaning to do a simple temperature check the next time I have a "bad" night and see what it is. Also to do a BP test
     
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  19. Forbin

    Forbin Senior Member (Voting Rights)

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    I've posted about this phenomenon on other threads (and on other forums).

    I've experienced this effect on a couple of other occasions. I believe author Howard Bloom has credited sleeping in four hour chunks with helping to improve his ME/CFS.

    It seems as though something may be going on late in the sleep cycle. I've had episodes of central sleep apnea in the past, so maybe it has something to do with that. Perhaps the apnea events only occur late in the sleep cycle - or maybe too many overall episodes of apnea during the night just wipes you out by the time you wake up.

    Shortly before seeing this thread, I was just wondering if patients might perform better on 2-day CPET if they were only allowed 4 hours of sleep between day 1 and day 2.
     
    Last edited: Jun 8, 2019
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