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What has helped more with your sleep?

Discussion in 'General ME/CFS Discussion' started by Beyond, Nov 1, 2013.

  1. stevesayshi

    stevesayshi

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    Staying up until 3 to 6 AM
     
    SDSue likes this.
  2. WoolPippi

    WoolPippi Senior Member

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    o yes, sleep hygiene is key, I totally agree.

    sleep restriction is something else. It's a forceful thing people try when sleep hygiene doesn't cut it. Basically you kick your body out of bed too early in the morning so the need to sleep builds up during the day. You do this two weeks every day. Feeling shitty and tired.
    The theory is that it forces your body to use its nightly hours to sleep. Good quality sleep.

    I think it's best for people who have messed up circadian rhythm, to "reboot the system".
    People with ME shouldn't ever reboot the system, it's way too delicate. That's why supplements need to start low and slow, imo.

    However, I am on the mend from CFS/ME and am now trying this therapy. Very cautious though! With supplement of hydrocortison and four weeks of no stressors.
    I try it because I've tried everything else. (except sleeping pills).

    I've just had my first week. No good sleep yet.
    I'm tired during the day. Even fell asleep twice.
    Need more Hydrocortisone and Progesterone just to function. And an extra meal. And more carbohydrates. I'm also more wired, even hyper at times
    My rhythm of activity and rest rotates faster during the day than it did before, I can hardly keep up. One minute I'm folding laundry, next I need to lay on the couch pronto. Way more faster than before, with "just ME".
    Yesterday I was dehydrated and started hallucinating for the first time ever and it was scary.

    So this is a dangerous therapy for us indeed. You need to be well versed in all your symptoms and you need some robustness in health.
    I try it ten more days, I'll get back to you with results. But the psychologist was an idiot for suggesting this without knowing anything about ME/CFS or adrenal issues. Luckily I do.
     
    Valentijn likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    Fuck sleep hygiene. ME sleep problems have nothing to do with good sleep hygiene, and sleep restriction is dangerous and pointless for us.

    I tried pushing through jet lag, and ended up unable to see properly or keep my balance. It was like my awareness was rapidly flashing in and out, so I had a jerky and incomplete awareness. I was completely non-functional and felt like I was losing it.

    Get some sleep when you can, and throw the sleep hygiene into the trashbin with the rest of the psychobabble.
     
    john66, redrachel76, NK17 and 6 others like this.
  4. Sparrowhawk

    Sparrowhawk Senior Member

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    Would be really curious to hear what has helped you be on the mend from CFS/ME? Is there a thread where you go into that in detail? Thanks, and hope your sleep experiments are fruitful.
     
  5. kristysmiles

    kristysmiles

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    Not to sound crazy or anything, but the only times I feel like I get a deep restful sleep is when I drink a little bit of Whiskey before I go to bed. Not sure why it works exactly, but I know my friend said that's what her parents gave her when she was little when she couldn't sleep.
     
    horcrux likes this.
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I don't think there is anything wrong with standard sleep hygiene (she says as she goes to get her blue-blocking glasses). It can be a part of a more extensive sleep program.
     
    Sparrowhawk likes this.
  7. amaru7

    amaru7 Senior Member

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    High dose Vitamin D made me sleep as deep as ever, but my sleep wake cycle is still messed up pretty much. It all has to do with neurotransmitters, which are messed up with CFS patients. Melatonin synthesis needs serotonin, one of the most important neurotransmitters, that controls sleep amongst other things
     
  8. Sparrowhawk

    Sparrowhawk Senior Member

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    Very interesting, I hadn't read about a link between D and sleep before. But I did start sleeping better after doing topical D. Thanks for the tip.
     
  9. acrosstheveil

    acrosstheveil Senior Member

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    i have never been a good sleeper but it has been insane these days. i found mirtazapine will knock you out cold for 10-12 hours. Much stronger than even benzos for me and way less side effects / addiction potential. it's also one of the most potent antihistamines on the market if you have allergy trouble. That's another reason I chose mirtazapine, i have mast cell activation issues and antihistamines help reduce the symptoms.
     
  10. physicsstudent13

    physicsstudent13 Senior Member

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    Wow how did I miss this amazing insight? sam-E may have nootropic qualities and help produce neurotransmitters. It also may help repair liver damage in pubmed studies and you can get it at pipingrock.com I'm going to get tracheotomy again because I can't exhale and the asv doesn't work that well- what a terrible journey

    actually klonopin isn't addictive and it has been proven in studies to reduce central apneas by 50% or actually another drug triazolam in the same family
     
    Last edited: Aug 1, 2014
  11. acrosstheveil

    acrosstheveil Senior Member

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    kklonopin isn't addictive? How's that possible?
     
  12. stevesayshi

    stevesayshi

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    I was sorta thinking the same thing. But in one sense it isn't, as it doesn't give you the fast rush of Xanax (alprazolam), so the dose typically doesn't escalate fast even in people with "addictive personalities" (Whatever that means, exactly).

    On the other hand, it very very much causes tolerance, downregulation of GABA receptors, physical dependence, and possibly the nightmarish withdrawal tolerance, often in a manner of weeks. I would consider it a drug of last resort.

    Interestingly, kava kava works as a benzo but may induce UPregulation of GABA receptors, as this discussion illustrates.
     
    MeSci likes this.
  13. acrosstheveil

    acrosstheveil Senior Member

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    well if you can't function without a substance, that sure seems like addiction to me.
     
  14. stevesayshi

    stevesayshi

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    There's some psychological subtlety between addiction and dependence, I think, but I'm not the one to ask what exactly it is ;)
     
  15. Iquitos

    Iquitos Senior Member

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    Yeah, I'm dependent on food and water, can't live without them, but I don't think I'm addicted. :)
     
  16. acrosstheveil

    acrosstheveil Senior Member

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    had to stop the mirtazapine. gave me wicked hangovers and felt strange the following days. My doc now gave me gabapentin. It has worked well in the past but does have some risk of dependency.
     
  17. WoolPippi

    WoolPippi Senior Member

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    yes, in a blogpost on my profile page but it's a tiresome read

    I did two things:
    1. ease up on my overwhelmed body (no job, no mother-in-law, no vegetables, no noise, yes stomach acidifier, yes self made chicken soup, yes full fat butter, yes Rest & Digest). Focus on healing the digestive en the nervous systems. Trial and error and no arguing with the body about its sensitivities and what it ought to.
    2. find the causes of the overwhelming, which I believe to be multiple and individual in ME.
    my individual causes are in my signature. It was hard to figure them out. Needed a GP dr. that let me take the lead.
    Supplementing vit. D, Lithium and Progesterone were my turning points together with Gupta Amygdala training. But by then my body had regained some of its robustness due to years of doing nr.1.

    my progress:
    • Listening solely to my body and ignoring conventional "wisdom" about what's healthy brought me from an activity level of 10% up to 35% and a livable life. (2008-2012) I felt like a freak but my body responding were victories.
    • Treating some of my causes brought me to 45% (2012-2014) I felt trapped but overtime I registered progress and patterns.
    • Taking progesteron everyday (it's nót a female sex hormone, its a basic building block) and desensitizing the Amygdala brought me to 75% practically overnight May 2014. I feel ungrateful because I sulk that I still have to do that maddening prioritizing MEers do all day every day too. Only not on the life necessities any more.
    • I'm scared that I mess this up, that I am breaking something slowly. That I run this body into the ground.
    Right now I'm building strength and trying to fix my sleep. Sleep Restriction Therapy has not given solid results yet. Will report back on that when the conclusion is clear.
    After that there's methylation but I've got to be at drastically lower doses than people on this forum advocate and then only twice a week.
     
    merylg likes this.
  18. acrosstheveil

    acrosstheveil Senior Member

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    is progesterone something males take as well? I'm assuming you are a female.
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    If you search the thread for 'progesterone' you will see that a number of men have tried it.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Diabetics then become addicts as they cant function without insulin??

    I think addiction to me is about someone using a substance who is chasing after a high and then when they stop have a hunger for more of that substance to get high.

    Dependence is something different again but can go hand in hand with addiction too but doesnt have too.
     
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