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What has helped more with your sleep?

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

  1. maryb

    maryb iherb code TAK122

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    @leokitten
    before I got ME I'd hardly taken any drugs (apart froma/biotics) in my life... this illness does terrible things to you, the sleep deprvation is so bad but I will probably try the zolpidem first - I still have 5 valium tabs that a doctor gave me 5yrs ago so that'll give you some idea of how I feel about drugs. just thinking about it - maybe I should bin them - they'll be well out of date:)
  2. leokitten

    leokitten Senior Member

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    I totally understand Mary, as a person with ME/CFS sleep issues were one of my very early signs this disease was coming more than two years before I had the sudden onset flu illness this past January.

    It's just that benzos will get you nowhere in the long run, only make you worse that is for certain. I know it seems tempting because popping a pill is a pretty easy thing to do compared to more comprehensive approaches to solving your sleep issues. Popping a pill takes no work.

    The thing I've found with this disease is that it's always working against you because it makes it so hard to do the things that are best for you with all the fatigue and malaise and just bad feelings it gives you.

    But you have to fight back, the best things you can do to get better with ME/CFS usually take a lot of persistence, patience, time and work and with ME/CFS it does take a long time before they show results but when they finally do you are so glad you achieved it. From what I've seen many people just throw in the towel because it's just too hard and I can understand. But unfortunately life is not fair, there is no free lunch, and there isn't a any magic pill you can take without it's consequences.

    Ambien (Zolpidem) or any other Z-drug is just as bad I have to say, totally addictive and presumably cause similar damage but there is just less data on them since they are newer.

    Read about Z-drugs here http://en.wikipedia.org/wiki/Nonbenzodiazepine its the same sad story and I wouldn't start with them either.
    Last edited: Nov 3, 2013
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    http://www.benzobuddies.org/

    My friend @Steve-22 got some of his symptoms before taking benzos for a couple years. I wouldn´t take a benzo with a stick. Some people aren´t lucky: they go to the doctor with what looks like psychogenic symptoms, and are prescribed that, and they trust the doctors because... are we crazy?? Doctors are there to help right? Doctors know better right? So they take their poison.

    I was lucky. The only time I took Valium it gave me a panic attack. The floor was trembling like we were in a boat inside the tempestuous sea. I asked my mother to hold my hand for hours that night, as I KNEW that not having an anchor to the sane world I would lose control.

    So yeah, not surprised to read that these things fuck you up.
    Last edited: Nov 3, 2013
  4. leokitten

    leokitten Senior Member

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    And Z-drugs should be put into the same category, they were a not so great attempt by the pharmaceutical industry to create a class of benzodiazepine-like drugs with higher specificity to certain GABA receptor types involved in sleep and a supposedly lower addiction and physical dependence potential.

    Unfortunately they didn't really succeed with either and they likely cause similar long-term damage and change in brain function.
  5. madietodd

    madietodd Senior Member

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    I think it's a mistake to believe doctors when they say we won't heal until we sleep well. It's obvious that I'd feel a lot better during the day if I could sleep through the night. But insomnia is very common, and relatively few of those people have CFS/ME.

    I think a great deal can be accomplished by practicing deep mental and physical relaxation. It's not like we have anything better to do when we're awake at night.
  6. Dreambirdie

    Dreambirdie work in progress

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    What I find most helpful when I can't sleep is creating a fantasy that I can really get myself into. That seems to make my right brain happy, and help me go into a trancelike state.
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  7. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I find that the best way to enter that trancelike state that usually precedes sleep is also letting my find fly, and is especially important not to think about when you will fall asleep because that breaks the magic...lol

    (Writing this at 0:37 AM after getting up from not being able to sleep, wo-hoo)
    Izola likes this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Each to there own but benzo's cant wreck someones sleep thats already broken from cfs/me. There are plenty of examples of cfs/me people who have never used sleep meds and still dont sleep well.

    For me sleep meds have been a big part of improving my ability to function and fit into the normal world and hold down a job with cfs/me, otherwise i would be on disability now. The strategy i have used for sleep meds has kept my doses down now for probably 10 years, i still have bad runs of crap sleep. If i didnt have to work then i could probably sleep when i could but this wont work if ones trying to fit into the real world. Maybe some have worse sleep issues then others. Some people cant tolerate sleep meds.

    I think no one is going to get better if they arent sleeping well, theres alot of process that occur during sleep that we need, without them we arent functioning fully. Im sure most insomniacs (not just cfs/me)would function alot better with decent sleep.

    Like i said at the start, each to their own but sleep meds do help some people with cfs/me, thats probably why its a hot topic.
    Izola, maryb and Sing like this.
  9. Sing

    Sing Senior Member

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    Thanks for pointing out the wiki article, leokitten. Reading it, I saw that a number of times it is said that not everyone agrees, some doctors and researchers do not find damage from short, even long term use. Also, some patients do become addicted and have a very hard time getting off, and some don't. You can't tell from the article, however, what percentage of doctors or patients see the negative symptoms and what percentage do not, and how common or uncommon the worst consequences are.

    I agree that there are down sides to almost every medication, this type for sure, but that the stress and degradation of one's life from insomnia can also be very destructive. So we each should really try to weigh costs and benefits.

    For me when I used a third of a .5 mg tablet of clonazepam, I did not have to use it every night in a row and I could get off them--slowly to be sure. It did make the difference in sleeping well vs. a partial night's sleep with multiple arousals or awakenings. However, if my diet and sleep hygiene and circumstances (quiet, no stress, and usually a chance to nap the next day) are all in place, I can go on without clonazepam or the like. But if I have to travel, or fit into normal people's schedules and be able to function ok, I could sometimes use it.

    Back to the "cost" side, I did feel an addictive pull with this drug and after awhile I noticed it added a degree of depression to my life that wasn't there before. By this I do not mean an addictive compulsion, nor do I mean major depression and suicidality, I just mean an addictive tendency and a somewhat depressive one too. After I got off the clonazepam, both aspects went away, which I appreciated. But as I said in my previous post, my original insomnia pattern re-emerged right away and continues on.

    Ambien is the only one of the Z drugs I have tried. It doesn't last long enough but worse, I have had amnesia episodes with it which could have been real trouble. I took the warning and won't take this type of drug.
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  10. maryb

    maryb iherb code TAK122

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    @Sing
    what are you using now to help with sleep?
    I'm on zopiclone but it does affect my memory terribly.
    If I could feel a bit better I'd be tempted to just try natural supplement - and take the few bad nights - but feeling quite ill the last 2 days so no chance of that as yet.
  11. vli

    vli

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    @maryb , I hear u abt the effects of zopiclone but i think in the UK, it's just about the "best" drug one can get prescribed for insomnia.
    i don't know abt others but in my own personal experience tca's like amitriptyline worsen tachycardia terribly.
    maryb likes this.
  12. Bob

    Bob

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    Potter's Nodoff (extract of Passion Flower / Passiflora) can help me sometimes. It has a similar action to Valium but is short lasting (about 3 hours), so it just helps you drop off to sleep but you don't wake up feeling groggy at all. Beware that it might interact adversely with prescription anti-depressants. The only negative for me is that I feel slightly agitated the next day, so I think it might be slightly addictive (i.e. you build a tolerance to it very quickly, and you experience the opposite effect when it wears off.) It's not a problem for me, but it might be for people who have trouble weaning themselves off Valium type drugs.
  13. maryb

    maryb iherb code TAK122

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    @Bob
    thanks for the info - I've tried valerian which was no help - so this looks interesting. I've used Potters a lot over the years - they used to be the top herbal brand at one time - well before herbal medicine became popular.
    Bob likes this.
  14. Bob

    Bob

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    It doesn't have an incredibly strong effect so it won't knock you out, but it is pleasant and can definitely make a difference for getting to sleep especially when tired but you can't get too sleep.
  15. PDXhausted

    PDXhausted Senior Member

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    I'm really sensitive to drugs and supplements, so haven't tried any for sleep. I'm a really light sleeper.

    The things that have helped me are: sleeping in a separate room from my spouse (this is a bummer but we both sleep better), lined curtains, and foam earplugs. The earplugs have really helped. I also eat something with a bit of fat and protein before bed so i don't wake up hungry, usually a slice of cheese.

    And the vitamins I do take, I take in the morning otherwise they are too stimulating later in the day.

    Also, to calm my mind before sleep, I do a meditation. I cannot figure out how to do these zen meditations where you empty your mind and focus on breathing, etc. For me what works is a sort of day-dreaming like meditation, where I picture myself healthy and doing something fun and happy or successful or relaxing. I just make up some scenario and that is usually enough to focus my mind and eventually drift off. It has to be an engaging enough scenario where your whole mind focuses and you forget about everything else, but also not too stimulating and can't have any negativity. Mine usually involve thinking up dialogue, because it makes me focus but yet is difficult enough that I'll eventually sort of give up and drift off. I'm sure this will be different for everybody.

    Of course, there are still those occasional insomnia/adrenaline nights where this stuff doesn't work, but at least it helps on most nights. I do usually wake once in the middle of the night, but if I try not to let myself "wake up" too much, I can usually get back to sleep. Once I check my phone, it's over though. I try not to let myself touch it at night. Otherwise I start googling "how to fall asleep" for the rest of the night, lol.
  16. Sing

    Sing Senior Member

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    Hi Mary, I wrote about what I have been using in post #43. On just trazodone and gabapentin I usually wake up in the middle of the night then have broken sleep afterwards. This didn't happen when I used a very small dose of clonazepam too at bedtime. My only experience with a Z drug, Ambien, only helped part of the night too, then caused a dangerous amnesia sometimes in the morning. I haven't tried Sonata which is the shortest acting of the Z drugs in the USA, I think. I would like not to use either of the benzos or the Z drugs but haven't come up with any other reliable help for the multiple awakenings of the second half of the night. Deep breathing and meditation helps me get back into sleep sometimes. But pain is there and I gather that causes sympathetic arousals.
    maryb likes this.
  17. IreneF

    IreneF Senior Member

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    I think many of us have undiagnosed Delayed Sleep Phase Syndrome.

    I've stopped being able to sleep at night. I can't fall asleep until it gets light. My cats love it it, my husband hates it.
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  18. belize44

    belize44 Senior Member

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    I must say that it is upsetting to hear that the Benzos are so bad for you, but after hearing this, not being told about options. I have found that the Xanax help me sleep, and stops the adrenaline surges that accompany my autonomic issues. Please, please tell me if there other things that will do the same without the damage, and not just scare the crap out of me because of what I actually happen to be taking now? And BTW, I was on Klonopin for two years, during which I finished college and started working full time as an Occupational therapist. I stopped the Klonopin and have not seen any difference in my brain power. Are you sure that all this is true? I am really desperate to get good sleep. I have tried Valerian, Melatonin, Kava, Flexoril, Ambien, you name it I have tried it. I really wish there was something that nourished the body and provided quality sleep without taking a dangerous toll on the body. I really do. I don't mean to come across rude, but I am very frustrated as I am sure others are.
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  19. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Is only "true" for some belize. It depends of the person and we have examples of people that got damaged from benzos and those that did not, I mean just in this same forum! My grandma has taken a benzo for decades for sleep. She is is not very sharp though, but that could be a flaw of character lol. She has bad health (looks awful, have blueish lips,have inflammed legs and toes, is obese), but talks a lot and does not complain of fatigue and such. No cognitive decline that I can see compared with her husband who has dementia. She gets B-vitamins shots by my sister the nurse, I am sure that helps.

    She laughs everytime I say "antioxidants" or "methylcobalamin" and says I think I am a doctor. Not very sharp as I said, and pretty annoying. I wonder how much the benzo, her crappy diet and other drugs have to do with how she is hahah. And how do her genes relate to mine!
    Last edited: Nov 7, 2013
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  20. perchance dreamer

    perchance dreamer Senior Member

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    I have chronic pain and occasionally take 20 MG of Baclofen at night. It really helps me for the pain, and I also get a much better night's sleep with it.

    Baclofen is a muscle relaxer. A pharmacist told me that it doesn't not have dependence potential like benzos. However, I still think it's better to take just occasionally. I try to stay away from pharmaceuticals as much as I can.
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