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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Ways to get sleep. Methods, drugs, everything.

Discussion in 'General Treatment' started by redo, Mar 4, 2012.

  1. redo

    redo Senior Member

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    Tonight I slept very well with this technique. I never sleep well without lots to sleep on, but tonight it all worked out. Hopefully it will do the next nights as well. What I did was simply to get up after lying in bed 30-60 minutes without being able to sleep. Got up, listened to an audiobook, and got back to bed. Didn't sleep, got up again, got to bed again, and slept only waking up one time (I normally wake up 3-5 times).

    Something which might have contributed was that I upped the melatonin dose to 15-20 mg.

    If that's enough to sleep, than it would be a revolution for me.

    EDIT: It's now the 13th of March, and I've slept well eight nights in a row using this techinque. I've had severe insomnia for years, so this is fantastic.
  2. Gavman

    Gavman Senior Member

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    What helped me the most was meditation.
    Also i'm surprised noone has mentioned this but a good b vitamin supplement can help boost your serotonin.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Do you know which component(s) of the B vitamin are involved in serotonin production?
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Xanax (alprazolam) - during the day and double dose at bedtime. Definitely helps. Would help more if it had a longer halflife and lasted through the night.

    Melatonin - 1 mg. at bedtime. Turned my delayed sleep cycle into a completely reversed sleep cycle. I have since read that the correct dose and timing varies a lot by individual and that melatonin should not be taken without the advice of a sleep specialist. Taking the wrong dose and/or taking it at the wrong time can make things worse. And How!

    Rozerem (ramelteon) - Taken at tablet, this definitely helped normalize my sleep cycle. More than that kept me asleep night and day. Once I quit taking it, my sleep cycle reverted. I dont think it is to be taken full time and is to expensive to take that way.

    Avoid caffeine after noon - and not very much in the morning (chocolate or green tea, very rarely black tea). Definitely helps.

    Bedtime snack - along with watching blood sugar during day. I eat a complex carbohydrate and some protein so that my blood sugar does not drop too much during the night. Definitely helps.

    Chamomile, passion flower, catnip, oatstraw, valerian, etc - singly and in mixtures, in pills and/or herbal 'tea'. I take one pill and have one bedtime tea each night. I think they are more helpful if I rotate them. They help some, some of the time. In the winter, I suspect any hot liquid helps {she says as she gets up to heat some water}. Too much valerian will keep me in bed the next morning (and afternoon).

    Reading after I am in bed - something not too interesting, often something I have read before. Helps some.

    Sleep mask - helps some.

    Ear plugs - made my tinnitus worse.

    Sleep CD - helps some.

    Electric Mattress Pad - I turn it on medium high and put my sleep clothes under the covers at least an hour before I go to bed, so everything is nice and toasty when I go to bed. I turn it down to medium low while I sleep. Definitely helps. When I was having hot flashes, I had very few during electric mattress pad season. The external heat source seemed to discourage my body from going overboard on heat production.

    Sublingual B12 - I keep this at my beside and pop it into my mouth as soon as I am awake enough to do so. B12 suppresses melatonin production. Helps me get awake some.

    While these thing help get me to sleep and keep me asleep, they do not improve my sleep quality.
  5. redo

    redo Senior Member

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    This is nothing short of amazing. For years I've slept some 2-4 hours a night, waking up 3-5 times during the night, when I haven't slept on anything. Now, I've slept well for the second night in a row, even without z-drugs, antihistamines or benzodiazepines.

    Here's what I did.
    First, 20 mg melatonin extended release, at 10 pm.
    Get up if I didn't fall asleep during 30-60 minutes. Listen to an audiobook.
    Set the alarm to 8 am instead of my normal 10 am. It makes it easier to get into a rhythm.
    Massage my own scalp, eyes, face to get calmer.
    Breathing technique, three seconds between breaths. It also helps get the pulse down.
    Counting to take my mind off things.

    I only woke up once during the night. I slept around eight hours, which is great.
  6. Valentijn

    Valentijn Activity Level: 3

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    N-acetylcysteine and valerian work for me.

    Melatonin aggravated my OI symptoms, and amitriptyline aggravated my other ME symptoms.
    ahimsa likes this.
  7. Gavman

    Gavman Senior Member

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    No but i can google it. :) Also good for enzymes to help breakdown foo

    'B-vitamins play a vital role in chemical processes throughout the brain and body. Research shows that unhealthy levels of essential B-vitamins like B6, B9 and B12 may contribute to poor mood and feelings related to anxiety and depression.

    Supplementing your diet with essential B-vitamins can have a direct effect on important neurotransmitters in the brain, such as serotonin, norepinephrine and dopamine. As well, evidence suggests that B-vitamins are important cofactors that help balance and metabolize neuro-toxic chemicals that have been linked to anxiety and depression related conditions.' - http://www.social-anxiety-disorder-resources.com/bvitamins.html
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    First i want to say that i dont feel that my sleep is related to anxiety, worry or constant thoughts. I have said that i am a tired but wired type but really im just tired and i feel that when i try to sleep, my off button just wont turn off. I think the infections that caused my cfs/me have probably damaged the sleep centre in the brain/hypothalamus??

    My experience with trying to treat sleep is that nothing is consistent and i need to swap and change between different treatments to keep them effective. Also some things help intiate sleep and other things help sustain sleep, i have also found that some things help improve sleep quality but on their own do little eg for me is lyrica and baclofen when taken with other sleep meds improve sleep quality but if taken on their own i could still be up all night with minimal sleep.

    I find benzo's and z-drugs good for initiating sleep but dont generally keep me asleep for longer then 2-4 hours. Antihistamines like diphenhydramine, phenergan etc help me to sleep longer. When i get into a real bad sleep cycle i will use seroquel(50mg) and it will put me out for awhile if i dont use it too often but i do find i need a small dose of valium as seroquel does make me wake up stiff and sore as well as achy legs during the night.

    Everything i use depends on changing it up frequently to avoid tolerence, which i dont think is a normal drug tolerence but more of a quirky cfs/me thing. Also doing this i have been able to keep my drug doses down which i think when some rely on one med for sleep they tend to keep pushing the doses up when it stops working, eventually i think this can cause tolerence and withdrawal issues. I also add natural stuff in the mix every so often, tryptophan, kava, withania are some i have found helpful.

    cheers!!!
  9. Ocean

    Ocean Senior Member

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    Tania I have this too. I hate it. I do fall asleep just fine at night if I use a sleep aid but without one I fall asleep late morning and am up all night. I hope I can change this! There have been periods where it's been better, so I have hope.


    As for things that help me:

    -Magnesium. This helped a lot with my restless leg, allowing me to be able to fall asleep once my body was ready.

    -Dark curtains. I ordered some blackout curtains and since I am often sleeping into the daytime, this has been a big help.

    -Dimmer on my bedside light, so I can turn it down very low in the hours before sleep and not shock myself into being more awake with a very bright light.

    -Fan for white noise or to drown out outside noise.

    -Silcone (wax?) earplugs for when there's outside noise during the day.

    -Relaxation/self hypnosis. I found some sleep relaxation videos online and then started using them in my head when I need to try to relax for sleep. This has actually been quite helpful. I was surprised.

    -Ambien helps me for a day or two but beyond that it causes me problems. I don't do well on antihistamines, benzos, or other sleep aids. Ambien is the only one that I can tolerate, but only for a very short time.
  10. redo

    redo Senior Member

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    About melatonin. The normal dose is around 3 mg (+/-), I've used 20 to 25 mg the last days. The role of melatonin is to tell the body that it's night, so I really think that such high doses might even be in the bloodstream by morning, so it's not like more is better necessarily. After I begun on high dose melatonin I've got this anxiety-ish like thing going on. I am not able to feel emotions like others, but it's definitively exerting some of that type of side effects. I looked high dose melatonin up on the net, and I see that there are reports from elsewhere that others also get that effect. I am thinking about lowering the dose to 10 mg and see how that works out.
  11. redo

    redo Senior Member

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    I've slept well for 18 days using this technique (now with lower melatonin doses, 10 to 15 mg), but tonight there was another night without sleep. Fell asleep at 10:30 am, and slept to 13:00 am, interrupted by several awakenings. It might be because I'm using metronideazole in the weekends, and this time it gave such problems. Or it might be other things.

    I've just got some benadryl in the mail, so I'll be trying that out soon.
  12. nanonug

    nanonug Senior Member

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    My two cents:

    1. Lithium orotate, 5 or 10mg at dinner
    2. Methylation protocol to normalize production of tetrahydrobiopterin (BH4)
  13. nanonug

    nanonug Senior Member

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    Carbohydrates cause an insulin spike that force the uptake of amino acids except tryptophan. Circulating tryptophan now has an easier time crossing the blood-brain barrier due to lack of competition from other amino acids. Once in the brain, tryptophan will end up being converted to serotonin and melatonin, assuming the right cofactors are also present.
  14. alex3619

    alex3619 Senior Member

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    Two ideas on improving quality of sleep but not initiating sleep:

    1. LDN. I started responding on just 1.5mg. I am currently on only 3mg which is not a high dose.
    2. For those who don't absolutely have to fit into a real world schedule, sleep when your body says sleep and don't force it. I can take up to 12 hours to fall asleep, and typically used to take 4 hours per night. When I started to sleep as I needed to without regard to a clock my sleep quality improved. I do fall asleep fast too, but its falling asleep fast when my body needs to - I can't keep any kind of regular schedule. So I might get a full 8 hours, or just 2 with additional naps, I feel better when I just go with it.

    Bye, Alex
  15. cat65

    cat65

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    I am not sure if this is works better or not but on another forum there was a person who seemed to know alot about melatonin. (I do not take it) She said it works best at smaller doses like 1-3mg. Other peoplr responded and said it worked better that way too. Also go to sleep as soon as you feel it starting to work don't prolong it.
  16. zoe.a.m.

    zoe.a.m. Senior Member

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    I really have a lot of good things to say about "I Can Make You Sleep" (other than the title...). I found a used copy (with cd) for a few dollars and I find both parts to be really different from what I've come across/used before, and I've come across/used a lot of things that I really believed would help a lot, but I would probably trade them all in for just this one. The exercises in the book are different from relaxation techniques and, well, just different. If you're a visual person I think it works very well and perhaps uses a different part of the brain to process. The cd is the one cd I don't lose track of. I have no idea how it might work for anyone else, but it filled a gap that buckyshades, fans, blackout curtains, earplugs, low light, meditation, etc. didn't altogether fill.

    Recently, I've used simple carbohydrates just prior to sleep (no doubt making myself fat!), and it does seem to be the something that pushes me from zombie-land to actual unconsciousness. A small piece of buttered bread to be exact.

    Massaging the scalp is really something. I almost never think of it, but actually just started rubbing a sore spot toward the back of my cranium (this was after sleeping a couple of hours, waking, and spending about 1.5 hrs awake but headed back to bed). The next thing I knew I literally fell asleep for a several seconds, and I am someone who never, ever, ever just falls asleep lying on the sofa watching some quiet tv, never. Someone ought to study my brain because I have (and have had since birth) an almost complete inability to even nod off, honestly.

    redo, I'm fascinated by your large melatonin intake. I find myself blowing by the 3 mg and wondering if there will be any consequences (I take a liquid dropper). I've always suspected that more might actually be more in this case, but have always been warned about messing with hormones. Please keep updating!

    One thing I've come to realize recently is that tachycardia can make it very difficult to fall asleep. This probably seems obvious! Except that I didn't know how high my heart rate was (normal feels normal until it gets really abnormal for me). I won't explain all of the details or why it took me so long to "get" this, but, if you can only sleep in certain positions or have other symptoms you attribute to anxiety or restlessness, get a heart rate monitor and keep it close by when you're symptomatic. As with a lot of physiology and ME/CFS, it's almost easy to become so used to things that, unless they go to a 9 or 10, they just don't really register. It's very difficult to shine a light when you're neurologically overloaded.
  17. ahimsa

    ahimsa Senior Member

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    I completely relate to tachycardia problems. Even though an increased heart rate does not cause me any delay in falling asleep (I fall asleep in under 5 minutes) I do know that my heart rate during the day affects my sleep quality during the night. Increased activity during the day, especially any activity that triggers my NMH (standing, heat), means that I will probably wake up a lot more often during the night. I always go right back to sleep after I wake up but when I wake up 10-12 times a night then my sleep is very fragmented.

    That's one of the reasons why resting all day, but especially during the evening hours, helps to improve my sleep at night. Even something as simple as getting ready for bed a couple of hours early (changing clothes, brushing my teeth, washing my face) and then resting in the recliner with my feet elevated helps to improve my sleep quality.

    zoe.a.m, I have not noticed any changes in my heart rate due to my sleeping position but now you've made me curious. I'll have to check!

    Back to the initial idea that redo had, which was a thread listing all the sleep suggestions, I think it might help to group these suggestions into categories based on which sleep problem it is trying to fix.

    For example, here's a quick list of different sleep problems (I'm sure there are many more, this is just a quick example):

    1. trouble falling asleep when you first go to bed
    2. waking up and then having trouble falling asleep again
    3. trouble staying asleep (waking up frequently)
    4. sleep apnea
    5. nightmares

    A suggestion for sleep problem # 1 may not help at all for problem # 5. And I have only problem # 3 but none of the other sleep problems. So my suggestions are unlikely to help with the other problems listed.
  18. redo

    redo Senior Member

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    I've slept well now for over a month, which is nothing short of spectacular given my insomnia problems. I've used 10 mg melatonin, but what's worked best is the "Getting up when not being able to sleep" technique, in addition to calming down before going to bed (audio book, dark, slow breathing).
    anne_likes_red and ahimsa like this.
  19. August59

    August59 Daughters High School Graduation

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    If anyone is interested there is a new very short acting zolpidiem (Ambien) n the market in US. It is called Intermezzo and it is taken sublingually and last no more than 4 hours. It comes in 1.75mg and 3.5 mg doses. It might be something that would work good on an alternating basis and since the dosage is so low it probably would not cause any addictive symptoms.
  20. taniaaust1

    taniaaust1 Senior Member

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    What other thing to do with electric blanket thou could it be? I have the same issue even if Ive left it on low when its a cold night, so its not a case of not being able to get to sleep due to being too warm

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