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KDM and sleep

Discussion in 'General ME/CFS News' started by heapsreal, Mar 15, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://www.cortjohnson.org/blog/201...iations-video-series-dr-de-meirleir-on-sleep/

    Interesting what KDM says about sleep and how infections and immune system disrupt our ability to sleep. I also thnk something gets injured/broken from the initial infection too. At the end of the blog he mentiones antiseizure meds he finds help people to sleep and then there is a dot point with neurontin/gabapentine, so dont know if this is what KDM uses for sleep issues. It would be good if a kdm patient could clarify this.

    I havent found neurontin helping me for sleep but does help me some with pain at night and thats 600mg before bed. Lyrica i find more calming but i have only use 150mg, maybe a higher dose would work but cant afford big doses. MAybe kdm uses different antiseizure meds?? I find i still need a low dose benzo or z drug to initiate sleep and then add mostly an antihistimine or if sleep has been crappy i will swap the antihistamine for a low dose of seroquel 25-50mg. Seroquel is a good sleep med i have found but on its own it sort of hard to get to sleep and when asleep u dont feel like your going deep enough to sleep but add a small dose of benzo and sleep is usually very good. Sometimes i will use mirtazapine or trazadone instead but they can be hit and miss.

    At the end of the day i hate having to medicate sleep but its the only thing i can do to sleep. bad sleep for me drops my ability to function right down to lying in bed not sleeping all day and feeling like crap with my head about to explode. It would be nice to just naturally feel sleepy at night and put my head on the pillow and drift off to sleep for 8 hours, now im dreaming, lol.
     
  2. Enid

    Enid Senior Member

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    Hi heaps, I'm not a KDM patient, suffering too from all you say over a long period but much taken with your thinking of "something injured/broken" from the initial infection. High dose Gabapentin over if I recall correctly at least one month did seem to reset something - I simply mostly slept day and night over this period and have a theory that it allowed some healing to take place. It certainly began some restoration of natural deep sleep again. Hope you can find something as useful.
     
    heapsreal likes this.
  3. Shoesies

    Shoesies Senior Member

    heapsreal I understand the sleep issue and agree that something in intial infection screws the pooch for sleeping, Neurontin did nothing for me. Lyrica does not touch the sleep issue. I do have ambien...it will help me sleep 3-4 hours a night, I only use it after three nights of less than 3 hours of sleep. This sleep issue is what I believe keeps me from coming out of relapse.
     
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Shoesies have you tried anti-depressants for sleep? I found 1 a few years ago, and I wake up more refreshed!

    GG
     
  5. lnester7

    lnester7 Seven

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    The issue is stage 4 sleep (for most) so you will only benefit from stage 4 inducers. Some like me have also Insomnia so I need fall sleep inducers also, But whatever is the real issue, you need to do a sleep study to know your particular situation. I HAD to point out the issue, because in the sleep center they only focus on the do u have apnea or not, and I knew from the Papers what our issue is so I asked and digging on my results I found out I didn't get to stage 4.
     
  6. anniekim

    anniekim Senior Member

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    Inester, are there any meds that induce stage 4 sleep? Thanks
     
    Little Bluestem likes this.
  7. tatt

    tatt

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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My sleep seems to have gone to poop of late but its been worse.
    Im looking into cycloset which is a low dose dopamine agonist that they are using to help reset the hypothalamus and fix sleep and circadian rhthyms, also said to help increase morning cortisol so helpful for adrenal fatigue too. but its main use is in type 2 diabetes, so these other benefits are off label i guess.

    I just wish there was one pill and didnt have to worry about all the other crap for sleep then and it worked forever, but fat chance:(.
    Sometimes i will take mirtazapine or seroquel but dam i wake up really stiff and sore which i think is because they do lower dopamine?? they do help me sleep though but depends how desperate i am for sleep??
     
  9. Ema

    Ema Senior Member

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    Flexeril (cyclobenzaprine) is a muscle relaxer that is meant to help with Stage 4 sleep. I have used it at a low dose (5 mg) and thought it worked well with no hangover the next day.

    Ema
     
    anniekim likes this.
  10. Spring

    Spring Senior Member

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    Sorry cant qoute on this device:

    'Interesting what KDM says about sleep and how infections and immune system disrupt our ability to sleep. I also thnk something gets injured/broken from the initial infection too. At the end of the blog he mentiones antiseizure meds he finds help people to sleep and then there is a dot point with neurontin/gabapentine, so dont know if this is what KDM uses for sleep issues. It would be good if a kdm patient could clarify this.'


    KDM prescribes clonazepam (Klonopin) as anti-epileptic to get to stage 4 sleep. It also helps me to fall asleep.
     
  11. jimells

    jimells Senior Member

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    I've been fooling with Rich's Simplified Methylation Protocol since November, and just recently started taking the full dose every day (instead of every other day). My sleep has improved greatly over what it was a year or two ago - perhaps due to the SMP. In fact my sleep is now pretty close to 'normal', as I recall the concept.

    Unfortunately better sleep hasn't improved my energy envelope. Although I will take better sleep over worse sleep any day!
     
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  12. lnester7

    lnester7 Seven

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    I use trazadone 200mg (not everybody can tolerate)
     
    SOC and anniekim like this.
  13. Tony

    Tony Still working on it all..

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    The IACFS/CE Primer (2012) mentions clonazepam (Klonopin) at very low dosage, 0.25-1mg as well as Gabapentin and others. Clonazepam is also an anti-seizure drug.
    I see Cort produced this last year which is a great guide to various expert ME/CFS doctors thinking on sleep.
    http://phoenixrising.me/treating-cf...cfs-and-fibromyalgia-a-prescription-for-sleep
    Further searching in that article shows that several ME/CFS experts use this drug at times.
     
  14. perchance dreamer

    perchance dreamer Senior Member

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    I was on .25 MG of Klonopin for 12 years for sleep. My doctor thought that such a low dose wouldn't cause dependence problems.

    I had a long, MISERABLE time tapering off it and thoroughly regret the whole experience. Not everyone benefits from this drug. It took me a long time to recover from it. I would never take another benzo for sleep.
     
    end, redrachel76 and overtrain like this.
  15. Mattman1

    Mattman1

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    It's pretty revealing that at the time of inception of the Benzos, it was thought that they wouldn't cause serious dependence...and then the horror w/d stories started to slowly pour into Psych and Doctor's practices of patients instructed to abruptly come off the drug. And what gets me, is, these stories emerged a good number of decades ago, and somehow, many of the people who have prescribing power in the medical profession either don't understand, or haven't been informed of the danger of pulling people off their dosage rapidly. Forget discussions on the speed of a taper...there are still docs that tell their patients after long term dosing (in many cases even years) to just come off the drug altogether.

    It seems a cautionary tale, and a significant one-- based on knowing the fundamental effect of mechanism these drugs have, I find it hard to believe that some of the brightest people making these decisions couldn't anticipate these problems occurring...I mean, the benzo effect on receptors is so similar in many ways to alcohol, and look at the withdrawals they go through.

    And to add insult to it all, a lot of the people that benefit from them the most (like many here) do so because they simply want better sleep to make life vaguely manageable; and there are heroin addicts that not only destroy their own lives but those around them, and often have a far easier time coming off their withdrawals. That's how nasty these sleep 'meds' can be.
     
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  16. Shoesies

    Shoesies Senior Member

    Benzo's caused me HELL detox coming off...they do make me sleep but at what price? I think I puked for 4 months straight.
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My personal opinion is that i would rather be dependent on meds for sleep then not sleep much at all, again my personal opinion.

    I also think cfs/me sleep issues are very different to normal insomnia in that i believe that the structure responsible for sleep is somehow broken, detoxing off benzo's etc i dont think is going to fix the problem either. generally its said that 'normal' insomnia is related to anxiety which i dont think in most cases of cfs/me is not the issue.

    cfs/me is a neurological illness and sleep issues are a part of this dysfunction. How do we fix it? know idea, but it can be managed with sleep meds and they have been a big part of keeping me functional.
     
    August59, Misfit Toy, SOC and 3 others like this.
  18. liquid sky

    liquid sky Senior Member

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    "My personal opinion is that i would rather be dependent on meds for sleep then not sleep much at all, again my personal opinion."

    Totally agree. I find the lowest dose of remeron along with ambien helps a lot and does not cause any side effects except for increased appetite. I am able to deal with that much better than no/little sleep.
     
    heapsreal likes this.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I don't think it is due the the nastiness of the sleep meds. A heroin addict has to only get past the physical withdrawal symptoms. Someone withdrawing from a sleep med has to also deal with the return/increase of sleep problems, while trying to deal with the physical withdrawal.
     
  20. Mattman1

    Mattman1

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    Absolutely-- which is why I find them so inherently nasty. You're getting hit with a host of symptoms that can make coming off heroin look like a stroll down a dark alley-- scary, but it ends relatively quickly in relation to benzo hell. So all prescribers should be made very aware of this, but it just hasn't happened here in the states, IMO.

    Who knows, maybe in the future we will get sleep aids that have effects that rival the benzos, but without the baggage-- I know the Z drugs don't do it for me, and neither do more 'natural' aids. I agree that some of us only get rest with benzos, and so we have to weigh which demon to deal with.
     

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