The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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What is the mechanism of feeling tired but not being able to sleep?

Discussion in 'Sleep' started by ChrisD, Jun 30, 2017.

  1. ChrisD

    ChrisD Senior Member

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    Does anybody else find that they can be yawning and feel really naturally tired around 8-9pm in the evening but when it comes to going to bed at 10pm+, the moment their head hits the pillow, they become stimulated or uptight?

    This is what happens for me, it then takes an hour or so to calm down my body which has gone into some kind of panic and eventually fall asleep. I quite often attribute this sensation to past insomnia and maybe some kind of ingrained worry about not sleeping, but generally I feel very relaxed at the moment so there is no reason for this to happen.

    This leads me to thinking that it is something more to do with Cardiovascular, or the digestive system. I do try to sleep both upright with pillows or completely flat but it seems to happen either way, and it is of course much worse if I have exerted myself. It's as if the more activity we do in the day, the CNS becomes more fired up and harder to switch off. Any thoughts?
     
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  2. lansbergen

    lansbergen Senior Member

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    That you are probably right.
     
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  3. PinkPanda

    PinkPanda thebiochemcorner.com

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    well it seems that in me/cfs the energy metabolism in the body is impacted. some reseachers found low pyruvate dehydrogenase function and high lactate levels in me/cfs patients. when your energy levels are low that might trigger excretion of stress neurotransmitters, especially when you exert yourself and your energy requirement rises.

    i think some stress-transmitters like cortisol can temporarily increase energy production, so the body might try to compensate with higher levels of cortisol etc.

    And it's not that much of an issue having high cortisol during the day but when the cortisol can't fall as it should at night, it keeps you awake.
     
    Last edited: Jun 30, 2017
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Have you tried sleeping on your right side instead of your left side? Sometimes that makes a difference, I find. My pulse often goes too fast if I am on my left side, although it can be OK if I get it just 'right'. Some others here find the same.
     
  5. TiredSam

    TiredSam The wise nematode hibernates

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    I've always had this, don't know if it's an ME thing. If I don't go to bed when I get tired between 10-11 pm I start waking up again and can easily be up until 2-3 am.
     
  6. caledonia

    caledonia

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    1) Being on screens too late at night can wake you back up again. Screens such as computers, tablets and phones emit blue light which tells your body to make serotonin which will wake you up. Your body is expecting amber light in the evening which tells it to make melatonin, which makes you sleepy.

    I seem to have become very sensitive to this since being sick.

    The way around it is to get off all screens by 8pm or even earlier. You'll have to experiment and see what works for you. Also get rid of any daylight bulbs you might have. TV could be an issue too for very sensitive people.

    I've tried blue light blocking glasses and software that turns your screen amber like f.lux, but those don't really work for me. They might help some people, but just the act of being on the computer is too stimulating for me before bedtime.

    2) If you have severe adrenal fatigue, besides your cortisol being much lower than normal, there can also be a reverse curve where it rises at night and wakes you back up again. It's necessary to do a 24 hour saliva cortisol test to make sure you really have an adrenal issue before trying any adrenal supplementation, but if you have the rise at night, you can try Seriphos to lower it back down.
     
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  7. adreno

    adreno PR activist

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    Perhaps you should try going to bed when you feel tired around 8-9, rather than staying up until 10+.
     
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    In case it is relevant, here is an old thread about this:

    http://forums.phoenixrising.me/inde...pounding-pulse-when-lying-on-left-side.27336/

    But I also found at least one where people (men?) got the faster pulse when lying on their right side! Maybe it depends on whether you tend to have fast or slow pulse? Mine is (naturally?) fast, and I have to take beta blockers.
     
  9. ljimbo423

    ljimbo423 Senior Member

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    I have the same experience sometimes. Usually now, only after a lot of physical activity or increasing the dose of one of my antibiotic herbs, both of which tend to wire me up.

    I think the exercise and herbs, worsen an already dysfunctional HPA axis. The HPA axis controls sleep, resting heart rate , digestion, the immune system etc. There's at least a couple of studies that show HPA dysfunction in cfs.

    The best things I have found to help are 5-HTP-50mg and sublingual melatonin- 2mg, at bedtime. That usually does the trick. It took me a long time to find that combination though. Hopefully you will have a much shorter path to what helps you!:)

    Jim
     
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  10. Alvin2

    Alvin2 Senior Member

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    There are hundreds of known possible reasons and probably hundreds more possible reasons not yet discovered.
    Body clock may be off, could be ME/CFS, could be classical sleep disorders, could be sleep hygiene, could be psychosomatic, could be noise/light, there is just no answer i can give that would be correct because each would have to be eliminated.

    If your tired at 8-9pm try going to sleep before 10, while your still tired, your body's melatonin rises when you sleep time arrives but fades after about an hour and you feel awake again, if your going to sleep afterward you've "lost" your sleep.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The more I overdo in a day, the more trouble I have going to sleep--I can 100% count on it. Yesterday was an example: I didn't get enough sleep the night before so was already tired, then had to drive an hour in heavy traffic for a PT appointment, followed by an hour and a half meeting in the evening and then an urgent task I had to complete on the computer. Result: needed double the sleeping meds finally getting to sleep about 2 am. I've tried different bedtimes and it makes no difference. If I overdo, I don't sleep.
     
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  12. AdAstraPerAspera

    AdAstraPerAspera

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    You have my sympathy, Chris - I always have the same problem and as many others have said, I find it worsens when I've over-exerted myself. I definitely think it's linked to adrenal fatigue, especially because of how many people link the issue to increased heart rate (I have a lot of trouble getting to sleep with a racing POTS heart) as a result of the sympathetic nervous system being overly active/out of wack and producing cortisol and adrenaline at all the wrong times. I definitely think it could try to 'save' you by making you more alert just at the point where you're exhausted enough to sleep! I always find avoiding any caffeine or foods that cause inflammation at night, along with dim lighting, peaceful music or meditation soundtracks and some melatonin and/or valerian root tablets help a lot with the symptoms. My doc told me I don't make enough melatonin naturally and my body just doesn't get prepped for sleep. Good luck :thumbsup:
     
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  13. ChrisD

    ChrisD Senior Member

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    Hi @MeSci I have tried sleeping on my right side and found that it does help a bit.
    @caledonia A long time ago I covered myself on bluelight, I have a devices off at 9pm rule (but maybe this should be earlier?) Also from 7-9pm my devices go into night mode with a blue light filter. I will check out seriphos and getting a cortisol test, thanks!
    @adreno I have also tried going to bed the minute that I start yawning,, but still I end up struggling to fall asleep despite being so tired. @ljimbo423 I mainly use L-theanine as I have found it to have the least effects the next day compared to the hangover I get from 5-HTP and particularly Melatonin.
    @Sushi - that is exactly what I find! It is as if the harder we work to stay awake and functioning normally in the day time that the body finds it hard to wind down again.
    @AdAstraPerAspera I'm completely caffeine free except for the odd green tea, I think I will try more herbs and adaptogens though and get a good meditation mixtape!

    It's so frustrating the amount of effort we have to put in to fulfil simple activities that should be second nature, I wish more people realised how hard we work to try to be normal and live
     
  14. PinkPanda

    PinkPanda thebiochemcorner.com

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    I have been trying out choline a bit. It has a calming effect and increases acetylcholine. Maybe it could help sleep?
     
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  15. caledonia

    caledonia

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    If you want to really dial it in, make a sleep chart that shows a graphical representation of when you go to sleep and when you wake up.

    Then experiment for several days with 9pm, 8pm, 7pm etc. For me, there is at least a one day lag time. So, for example, if I stay up past my 8pm deadline on Monday, it starts affecting me on Tuesday. So that makes it a little tricky.

    I'm attaching an example of my chart - I had made it so I could describe the issue to sleep doctors (but of course they couldn't help - I found out about the blue light on here!).

    You can see my sleep had gotten into a non 24 hour cycle where it was moving forward a bit each day. I still have the wakeups at night and often need a nap in the day to compensate which you can also see on the chart, but at least now I go to bed and wake up pretty consistently as long as I get off the computer by 8pm.
     

    Attached Files:

  16. gabriella17

    gabriella17 Senior Member

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    This has been a huge problem for me as well. Until about 10 years ago, I never had any sleep issues, rarely had insomnia. I would get sleepy and go to bed, and I'd fall asleep within 10 minutes. And back then, I was even smoking - so despite nicotine being a stimulant I could still sleep fine.

    I do think the blue light is an issue... because I used to read or watch a non-LED TV.

    In my case, I think it's related to CNS issues. I don't get drowsy or sleepy anymore. Just tired and wired. Also, I feel a sort of "restless leg" thing throughout my entire body in the evenings, and it feels impossible to sleep. The hours before bedtime are the worst part of my day.

    Here's the weird thing. I've been wanting to just make myself to go upstairs and get into bed, and take a couple of trazadone - and I'm fairly certain that would get me to sleep, but during those evening hours, I can't seem to make myself go upstairs, no matter how much willpower I try to muster. Why on earth can I not make myself just go upstairs to bed? I can even go upstairs to adjust the thermostat if I get uncomfortable enough, and you would think that I can then just get into bed while I'm up there, but it doesn't work! I still find myself going back downstairs! :bang-head:

    Anyone else experience this? o_O
     
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  17. caledonia

    caledonia

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    I'm not sure about not being able to go upstairs - I know I don't like going to bed until I'm good and ready.

    The restless leg thing could be magnesium deficiency or a symptom of electrolyte deficiency in general. Especially if you have other symptoms like heart palpitations, muscle cramps, twitching feet, constipation, not feeling relaxed and calm, etc. If so, it can mess up your sleep causing many semi awakenings all night long.
     
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  18. soxfan

    soxfan Senior Member

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    This is exactly me...I keep a regular bedtime...I don't use computer or phone after dinner...I do sometimes watch a tv show but mostly I will just read.
    I am usually very tired when I get into bed ...even yawning even though it isn't that nice sleepy feeling...

    I can almost always fall asleep with whatever I take but it is never a refreshing sleep no matter what. I can sleep 7 straight hours and wake up feeling like junk.

    Melatonin hangs me over something awful...even 1 mg which to me means my body has enough.
    It is definitely a whacked out nervous system which for me goes haywire at night. My body has totally lost the ability to calm down and relax.. I do have meditation tapes I listen to and they help while listening but the minute it turns off my body goes crazy.

    It doesn't matter what I have done during the day..it's the same very single night..no rest and relax for me now since 2004... what I wouldn't give for a peaceful and refreshing nights rest again.
     
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  19. Alvin2

    Alvin2 Senior Member

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    Lately i have been coming to appreciate how much acetylcholine affects sleep. There is very little research on this except that it increases rem sleep but it seems to affect everything from sleep timing, sleep initiation and sleep quality. Interestingly if the pyruvate dehydrogenase theory is correct it provides indirect evidence that our levels are low. I've seen how it affects sleep in Parkinsons (again not well researched) and i found taking acetyl carnitine (which increases acetylcholine) has has multiple effects on my sleep, though i am only taking 1 tablet a day so far and planning on trying higher doses to see what happens.
     
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    How much are you taking? I have some tablets that have 200 mg alpha lipoic acid and 250 mg acetyl-L-carnitine. I keep stopping and starting them at present due to not knowing whether they are having adverse effects. I was taking them for years, but recently my metabolism seems to have changed, possibly due to age (I'm 64 and have been ill for over 20 years).
     

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