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Sleep gives me PEM

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by lnester7, May 7, 2012.

  1. lnester7

    lnester7 Seven

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    Hi,

    I am doing much better but I Still do not have PEM and POTs under control. When I wake up I have the worse PEM of the day, spine and head buzz/burning, it usually takes 2h to get better, it is hard to get out of bed. I raised the head of the bed last night (8") and increased the melatonin to 10mg (by mistake took it twice) and I noticed a significant reduction in PEM but any other suggestion is appreciated.

    Tx,
    7
  2. SOC

    SOC Moderator and Senior Member

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    I wouldn't have guessed one could get Post-Exertional Malaise from sleeping. Just what is it that you are doing in your sleep that is so much exertion? Or do I really not want to know? :D

    Spine and head buzzing/burning sounds neurological. Any chance you could talk with a neurologist about it?
  3. lnester7

    lnester7 Seven

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    SOC u cracked me up!

    Needed a good laugh. I have been good in my sleep (at least the last few days). :D

    Now that I have learned to recognize my PEM I am sure it is what I feel when I wake up. I will talk to neuro but my PEM is like that all the time burning in spine and head buzz and burning.

    7
  4. taniaaust1

    taniaaust1 Senior Member

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    It used to have be at one of my worst times when waking up too... it used to take me ages (up to a couple of hours) until I was okay to get up.

    In my case the symptoms first thing in morning turned out in some degree to be related to hyperinsulinema. We usually eat our biggest meal dinner at night.. and insulin levels can then be up all night due to this and still up first thing in the morning (in a normal person they will come down during the night but mine didnt so my body was in excess insulin state).

    There was also something to do with my brain wave state in the morning too which affected me more then after waking.

    Thou it also may look like sleep is giving you PEM symptoms.. it could also be related to when you are doing your main activities the day before and how long in your case the PEM takes to hit you.
  5. Sparrow

    Sparrow Senior Member

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    Sorry you're feeling so crummy.

    Could there be something you're doing at night that might be triggering PEM? I know I often wake up feeling awful, but because of things I did in the day or two before. If you spend all day resting extra, do you still feel as bad the next morning?
  6. SickOfSickness

    SickOfSickness Senior Member

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    This is obvious but I used to have this too, from sleeping on a bed that was too firm or too soft. If it's too firm, then I would not be getting enough blood flow and my arms would be getting that numb tingly feel during the night. Soft can be as bad or worse.

    Also from other sleeping conditions making my sleep quality worse. Temperature of the room, humidity level, amount of light, amount of noise, if the pillow is too high or low, if the pillow is too soft or shaped differently than I like, if someone else is in the bed moving, and other reasons.

    If I slept too little. Sometimes 8.5 or 9 is too little and I can tell, if I was needing 10 or more hours for repair.

    If I stayed up too late the previous night is a big one.
  7. lnester7

    lnester7 Seven

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    I am sure it is the sleep. I am in day 2 of raising bed, and it was better again, less PEM but definitely not all gone. I tried different beds as I go to different hotels but Is the same level of PEM anywhere I sleep.

    TX for the replies!!

    7
  8. DANEL

    DANEL

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    this may be off, but this started to happen to me when i lived in a moldy house. the mold really messed with my brain. i don't sleep well, my MSH numbers are low 23 Shoemaker says anything <35

    it is like my brain is Lit up. constantly moving, overstimulated, all i see when my eyes are shut is white flashing light, it doesn't stop all night. it is like i am sleeping but awake, looking at myself sleeping. weird, scary, my brain has really been affected the mold.

    could you have mold?

    denise
  9. DANEL

    DANEL

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    this may be off, but this started to happen to me when i lived in a moldy house. the mold really messed with my brain. i don't sleep well, my MSH numbers are low 23 Shoemaker says anything <35

    it is like my brain is Lit up. constantly moving, overstimulated, all i see when my eyes are shut is white flashing light, it doesn't stop all night. it is like i am sleeping but awake, looking at myself sleeping. weird, scary, my brain has really been affected the mold.

    could you have mold?

    denise
  10. lnester7

    lnester7 Seven

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    I am in a 5 year old house and i bought it new. There is not signs of Mold, is there a way to know if there is mold? in a visual easy way?
  11. taniaaust1

    taniaaust1 Senior Member

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    Daniel.. thanks for your post. I have had big mold issues in the past in house where I still live now. I used to get bright white flashing (like as if you have your eyes open and someone suddenly shines a bright torch in ones face.. and then turns it off), when I was trying to sleep and had my eyes shut. Often I used to get just the one bright flash but at other times it used to having several times in a row.

    I put the symptom down to kundalini meditations I used to do but with your post and with saying a mold connection, now Im wondering.
  12. Valentijn

    Valentijn Activity Level: 3

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    This really doesn't sound like PEM ... more like excitotoxicity. PEM is more like having the flu ... muscle pain, joint pain, hard to move the body, etc. But without the fever. And PEM will come as a result of activity ... you might first feel it in the morning after being too active the previous day, but it won't go away in a couple hours.
  13. taniaaust1

    taniaaust1 Senior Member

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    I agree with you on what PEM is

    neuroexcitability can be a post exertional reaction from the day before too. (one of the reasons why I so much hate the term PEM, as many of us get post exertional reactions which term PEM doesnt fit).

    When I get PEM, it can actually come with a real fever.
  14. Wonko

    Wonko Senior Member

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    I agree, but I have had PEM as a result of dreams, a dreamed challenge (such as a forced decision when no option is acceptable) can cause PEM the same as the same situation would when awake.
    taniaaust1 likes this.
  15. lnester7

    lnester7 Seven

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    When I overdo, this is what I feel. If you see the thread on Describe your PEM others do too. I will ask my Dr about excitotoxicity and do some research see if it explains what I feel. TX!!

    I used to feel all this stuff you describe with PEM, but since I am on imunovir and equillibrant all of that is gone (gone 3 months now) and only have the burning left.

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