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Why cant we sleep when we a tired??

Discussion in 'Sleep' started by heapsreal, May 7, 2012.

  1. August59

    August59 Daughters High School Graduation

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    The deep sleep deprivation is a definite part of this disease. I have had 4 slstudiesudys since 2004 and the highest amount of deep slow wave sleep is 9 mins. During that particular sleep study my sleep doctor had me on Ambien CR 12.5mg and 4.5 ml of Xyrem and slept almost 7 hours and got only 9 mins. of deep sleep. I got 0 mins on two of the other test and 5 mins on the other. Something with this disease malfunctions our sleep. Xyrem is not a guarantee of deep sleep with this disease. I have had 8 years of known deep sleep deprivation at this point and if there was a way to rate it. It would probably be a 6 out of 10 in 2004 and now I'm at a 2 out of 10 and cannot even no longer take Xyrem without getting very severe anxiety during the day.takesakes at least a week of being of the Xyrem for the anxiety to subside. My last sleep study also included the MSLT (Nap Test) the following day and it was moderate to severe narcolepsy with central apneas and some alpha intrusions. He said it was one of the most non-typical sleep patterns that he had ever seen. I do not think our sleep can be fixed till they determine what this disease is doing to us and start finding was to reverse or heal our bodies from it.

    I think it is he same reason we will not fix ouaxisA axix until we find some way to heal from this disease. We just have to do the best we can and hope, but I have just about ran out of hope. There will not be anything within the next 8 to 10 year and there is no way I'll be around here then. I'm donating my brain, spine or whatever they want and hopefully it will be beneficial to the rest of you.
  2. kurt

    kurt Senior Member

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    Sometimes I think the sleep problems with CFS are being caused by some theory or other, I try some supplements, meditations, or other treatments and they work for awhile. But then eventually they stop working so well. The only completely reliable treatment I have found is to use magnets over the abdomen, which in some way appears to cause natural melatonin release. But other things have really helped, particularly taking a rehydration drink with some supplements to help stay hydrated during the night (most important is probably Ester-C, or just bioflavonoids, with the rehydration drink). My conclusion is that this whole problem is just a result of a dysregulated autonomic nervous system. It seems many different triggers can cause the ANS to malfunction. The worst for me is if my adrenals are exhausted at the end of the day, that keeps me awake, the adrenals must be rested to sleep well. Just some random thoughts.
  3. SOC

    SOC Moderator and Senior Member

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    So glad you finally got some sleep, heaps! It would be nice if the panadol was some help. Maybe to do have unrecognized pain signals, too. Lousy sleep is SO miserable. I can't begin to describe how much better I feel now that I finally get into the deep sleep cycle. I remember an old Star Trek (Next Gen, I think) where something was preventing the crew from getting Phase whatever sleep -- the deep sleep. They were all getting completely nutzoid irritable and crazy from lack of deep sleep. It really is like that. That's got to be hard on our brains.

    Do you stay asleep once you fall asleep?
  4. taniaaust1

    taniaaust1 Senior Member

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    Im glad to hear you sleep last night. I hope the panadol turns out to be the missing answer to helping your sleep issue.
  5. xchocoholic

    xchocoholic Senior Member

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    This is a problem for me too. I tested positive for nocturnal myoclonus. So my body jerks
    when I enter rem. It's not the "normal" jerking we see. It's exagerated so it wakes me up.

    So far, I've figured out that I can't eat past 6 -7 pm. Getting some vigorous exercise during the day helps but not too late. Sometimes I can sleep without taking anything but I need a combo of melatonin, theanine and 5htp if I can't. I can fall asleep better with the tv on as
    it's nothing stressful. And I need to stick with a 10 pm bedtime.

    I was thinking we don't produce enough melatonin or serotonin. Tc .. X

    Eta .. It's after 11 pm and I needed to add excitotoxins to this. Lol ..
  6. SOC

    SOC Moderator and Senior Member

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    I know Trazodone (Desyrel) has been really bad for some people, but it has been a godsend for me.

    Trazodone decreases the time spent in stage 1 sleep, and increases the amount of time spent in stages 3 and 4 sleep. That means far more refreshing sleep, more nocturnal growth hormone secretion, and the most profound degree of rest. I don't think I was getting much stage 3 or 4 sleep prior to taking Trazodone. Now I sleep like a normal person.

    FWIW, I take 100mg of the APOTEX brand which has worked wonderfully for me for more than 5 years. Last winter I unknowingly got the Pliva brand (from Croatia). It made me horribly ill for months including suicidal ideation, even though I'm not at all the suicidal type. I also went back into the really bad sleep condition. It was hell. So I strongly recommend avoiding the Pliva brand. Unfortunately, it seems to be the one carried by many Walgreen's and CVS Pharmacies in the US.
  7. jimells

    jimells Senior Member

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    We're cheering for ya, Heaps! A victory for one is a victory for all!

    My sleep has improved quite a bit since starting Florinef. Now once I fall asleep I can usually stay asleep most of the night. My theory is that I'm getting more blood to the brain. While lying down in the evening, it's not unusual for the pulse to drop below 50. Unfortunately the heart rate monitor doesn't record min pulse. It would be interesting to know how low it goes during sleep.

    I turn the radio on to the BBC news at bedtime. It gives me something to listen to instead of thinking how much I'd like to strangle the useless doctors, lawyers, and bill collectors.
    heapsreal likes this.
  8. SickOfSickness

    SickOfSickness Senior Member

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    Generic Benadryl helps me fall asleep, but I believe it interferes with REM. Foggy brain, so maybe I remember wrong, so it helps with getting to sleep and sleeping a longer amount, I feel better after it, but I feel it's not good to take often or you lower REM too much. Personally I also get depression and mood problems if I take it more than 2 or 3 times. It is related chemically to benzodiazepenes, those make me depressed from as little as 1.5 doses.

    I have the symptoms of DSPS and non-24 too. IMO most PWC have it, but some found drugs and supplements to fix it.

    Sleep deprivation causes us other health problems too, after years of it :(

    I have hope there are new treatments available in under 4 years.

    Have you formally gotten documents to donate your body parts? I want to do this too, how do you set it up so it goes to medical studies instead of regular organ donation?
  9. taniaaust1

    taniaaust1 Senior Member

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    Thanks for this post jimells cause I've put Florinef down as possibly one of the things which has caused my sleep to improve but till now, I hadnt seen before anyone else say that. Like you, my pulse goes quite low when Im laying
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Things i have read that can help with inducing deep sleep are mirtazapine, baclofen as well as lyrica and they have helped me but obviously nothing is perfect and usually have to take them with a benzo to get me to sleep and they tend to improve sleep quality.

    Its strange after the good nights sleep but today i was tired but not tired and wired which is a good thing i think, atleast my brain doesnt feel like its slowly cooking anymore, for the time being.

    Pain just might be an issue, my wife said that last night i would roll over and go 'oh shit' whenever i rolled over, i wouldnt have called it pain, maybe minor aches and stiffness but maybe its enough to stop me from getting into deep sleep, even though i thought i slept well last night. I wonder if lyrica helps me with pain and its why it helps me sleep but once again like everything if used all the time they stop working. It would be nice to get to the cause but until then all we can do is treat whats breaking down.

    thanks for the well wishes guys,
    cheers!!!
  11. mellster

    mellster Marco

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    Slightly off-topic but all my temporary sleep issues almost completely resolved after taking LDN for a couple of me months. Now I take it only as need (also for pain) and if I take it a couple of days in a row in full dose I actually get too sleepy. LDN def worked wonders in that area.
    monk5990 likes this.
  12. soxfan

    soxfan Senior Member

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    I do think our sleep has something to do with the dysregulation of the ANS. I know when I became sick my thryoid went wacky and so did my adrenals. I also know I do too much every day which is probably why I go to bed extremely tired but also physically wired. It isn't even my mind that is going it is my body. It feels as though I am being pumped with something through my veins which makes my body very hyper feeling. It is in my chest and stomach area mostly and also the heart pounds. I know it really isn't pounding but I have the total sensation that it is pounding very hard. I can feel every single beat....
    I also find when I am upset during the day because I can't do things then that carries on into the nighttime and definately disrupts my sleep.

    I never feel physically rested and refreshed in the am....I have tried at least a dozen medications to try and help me feel rested. My latest was 5HTP and it made me feel like I was tripping on something..horrible and that was only 50mg.....so disappointed that it didn't help. I can't even take benadryl anymore suddenly because it leaves me extremely drowsy and I use to take it for years...
  13. SaraM

    SaraM Senior Member

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    Pain is the root cause for my sleep problem.A few things which help me:

    Potassium :helps with muscle pain and heart pounding
    Phosphoserine : heart pounding

    B2 , B12 and probably other Bs : make me sleepy but the next morning I feel tired . I should lower the dose
    Gaba , taurine, and a lot of Mag: tried them last night and woke up with very bad heart pounding, and diarrhea in the morning. They are supposed to help with sleep .
  14. xchocoholic

    xchocoholic Senior Member

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    Hi soxfan,

    I could've written this. The wired feeling for me usually comes from excitotoxins. For me these incude gluten, hfcs, caffeine, mb12, adb12, p5p and drinking too much of my veggie juice.

    And like you, from being over stimulated stresswise.

    As far as using 5htp, I can only use natural factors brand. Two other brands didn't do anything for me. And I had to start really slow. The first time I took it it felt like my brain froze up. Lol .. I stuck with it tho because my body can't sleep unaided and I'd read a lot of great things about about serotonin. Now I use 50 - 300 mg as needed.

    Tc .. X

    Ps. I just had to start using .125 mg of klonopin for sleep if I drink too much of the veggie juice I started making a month ago. I'm still playing with this .. I get the funniest feeling from klonopin now. After about 15 - 20 minutes, my brain completely shuts down and I immediately fall asleep.
  15. soxfan

    soxfan Senior Member

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    X- I tried the natrol brand of 5 HTP and it was a wafer that dissolved. I broke it into quarters and then half. One night I took the entire thing and felt so very strange. I didn't want to take it again.
    I am going back to neurontin since I have nerve pain in my feet and legs. I have never tried 300mg as of yet all at once so I am going to do that. I have only taken 200mg at night.
    I have also taken klonopin for sleep but the sleep specialist said it can definately cause disruption of stage 4 and it is not good to use at bedtime. It really does help me sleep on those nights when nothing else works though...

    I am much worse off sleep wise when I work because of the overstimulation I get from the job and being on my feet for 6-7 hours. Tonight I am very wired and exhausted so I know it will be tough to fall asleep...I am sorry you have the same problems. It is really the worse symptom for me.
  16. Zensational

    Zensational

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    I have tried Klonopin and was glad to get off is it. It is a benzo and I found that I needed more to accomplish the same result. Also still didn't feel rested. I've tried Gabapentin and that made me stagger and loopy (more than usual) and got off of that. I might try the Trazedone.
  17. soxfan

    soxfan Senior Member

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    I have tried trazadone as well....it made me hungover for a full 24 hours at 50mg. I know it helps alot of people but I have tried it many times with no success...Klonopin helped me sleep but I didn't feel rested..not that I ever do.
  18. xchocoholic

    xchocoholic Senior Member

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    - I didn't try natrol brand wafer but I can't remember which two brands I tried either. I just know I didn't try a wafer.

    I don't do well on meds generally. I had hallucinations from neurontin. That was freaky .. I hope it helps your pain. It's funny you mention nerve pain in your feet and legs. I have a freind who just told me that she gets this gets from eating gluten.

    I actually have to take 9 mg melatonin, 300 mg theanine and 300 mg 5htp to sleep if I'm really wired. My brain won't shut down otherwise. I played around with each of these for several years till I was finally convinced. Somehow, they work together. Natural factors makes a sleep supplement with these 3 combined but I need different dosages of each.

    I hadn't heard klon could disrupt stage 4 sleep. Bummer. It works so well tho. I only started taking this about a month ago because
    the juice I'm making is keeping me wired. And that's on top of my sleep supplements. I could stop juicing, lol, but I want to experiment some more.

    I empathize with you for having to work and deal with this. Hope you can get some sleep tonight. Tc ..x
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think with sleep meds we are really just going for quantity to try and make up for sleep quality, any sleep is better then no sleep.

    cheers!!!
  20. xchocoholic

    xchocoholic Senior Member

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    Hi heaps,

    I haven't read this whole thread so I hope you're getting some sleep now. Fwiw, I know we're all different . But .. I couldn't believe
    the difference in my sleep quality on the supplements I take. Especially the 5htp. I don't remember EVER feeling the deep level of sleep I get from this when I was taking Klonopin or the other drugs. They also never made me feel as rested and yet awake the next day.

    I "think" I really needed the serotonin and/or whatever 5htp converts to. Tc . X

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