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What has helped more with your sleep?

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

  1. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I know heaps. Just haven't gotten around to it. Also, some people have said it really sedates them so there is that too. It's on my list.

    Mink
     
    Izola and heapsreal like this.
  2. belize44

    belize44 Senior Member

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    I am struggling with that great question, too - what to do about fragmented sleep? o_OI seem to respond to most drugs with high sensitivity and often need a much tinier dose than what is prescribed. For a while, I was using Xanax ( one quarter of a 0.5 tablet before bed) At first I slept deeply and woke refreshed and in a good mood. Then I started to need one half, and still I was waking about four to five hours after onset of sleep. So I stopped that, and started using one quarter of a Flexoril (cyclobenzaprine) which I absolutely despise, since while it delivers deep sleep, I wake unrefreshed and horribly hung over. But this time, my sleep was so fragmented that I felt like I had spent the whole night casually napping while my thought raced horribly. I have been thinking of going back on Klonopin since I never had any problems with it before, but I have to keep in mind that the last time I took it was seventeen years ago. My body chemistry may have changed. I have also tried Valerian and Melatonin, Kava, chamomile tea ( a joke) and Ambien which made me feel as if I were tripping if you know what I mean. I also sleep walked with Ambien. :thumbdown:
     
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  3. Sing

    Sing Senior Member

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    Dr. Alan Pocinki talks about the importance of treating our sleep issues in the last ME/CFS Alert video. There is another great talk by him in which he goes into more detail about which medications he used You can find it on vimeo and it is completely relevant even though the title is, "Clinical Autonomic and Sleep Disorders in Ehlers-Danlos Syndrome. (Vimeo would not allow me to post the direct link on this site.) He spoke about how he treats pain, which is an important part of frequent arousals for many of us, said he might have a patient take four different medications at bedtime and was more specific about what those are. A full night's sleep, as he sees it, is the foundation for any sort of improvement.

    Also, major papers carried research information in the past few weeks which shows that a lack of deep sleep is associated with a higher incidence of Alzheimer's and other dementias later on. The reason, it is believed, is that in deep sleep the brain is bathed in cerebrospinal fluid which washes away protein fragments and other toxic substances or end products. Deep sleep is when the brain gets its detox treatment! So a lack of deep sleep is very very important to treat.

    What has worked for me is the smallest effective dose of trazodone, clonazepam and gabapentin, but well over a year ago I got off the clonazepam because my doctor did not want me taking anything addictive. It was a slow taper down of tiny increments of pill, but I did fine, as far as the dependency went. However, sure enough, I went back to exactly the same sleep issue as before--waking up in the middle of the night then having multiple awakenings or even no sleep after that. Pain definitely feels like the reason I have all those "arousals".
     
    Last edited: Nov 2, 2013
    Izola, WoolPippi, maryb and 1 other person like this.
  4. beaker

    beaker CFS/ME 1986

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    Just the opposite here. If I don't nap and/ or I push, then I am "wired tired" and then no sleep and then the cycle perpetuates itself.
    Isn't that the way of this illness ? Sometimes the opposite things work for different people.
    Another example is if I want to fall asleep electronic devices ( tv, computer ) will put me out. I often wake up with my computer on my lap.

    I spent several years working w/ a very determined and kind sleep specialist. Used all the standards and then some. Tried combinations that the pharmacy would tell me were dangerous and called the dr. to double check the script.
    Tried Alternative/complimentary med. and techniques of all sorts.
    Klononpin has been a mainstay . But I have gone for years w/o it putting me to sleep. But b/c how it still makes my brain function and sleep a better sleep when I do sleep, so I stayed on.
    Ambien worked for a while. But then stopped. And was horrible for the increased forgetfulness and amnesia while on it. Reglan will knock me out, but the sleep is wretched and awful hangover.
    Only used when extremely desperate.
    Other than that, nada.

    For whatever reason, after many years of extreme insomnia, I sleep and sleep and sleep.
    Unless , of course, wired tired and then I go for a few days of no sleep and then crash and sleep round clock.
    The illness changes over time. I give up trying to figure it out.
     
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Rescue Remedy by Bach Flower Remedies might be helpful.
     
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    0.25 mg Xanax is still a small dose. Since it was helpful, it might be worthwhile to try 0.5. My doctor OKed 0.75 at bed time for me, but I thought that much was making it more difficult for me to wake up (despite the fact that Xanax has a short half-life and the 0.5 I am taking does not last until morning).

    Many of us take several sleep aids. While a herbal tea on it's own may be a joke, I think that the routine of making and drinking the tea does as much for preparing my body to sleep as the contents of the tea.

    I also find it helpful to take some calming, but not sedating, supplements and meds during the day. That helps prevent/reduce the wired but tired feeling at bedtime.
     
  7. madietodd

    madietodd Senior Member

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    Are there others here who wake up all night long for no reason? I don't have pain, my mind is calm, I never nap, and I usually get to sleep easily. But I wake up every hour to hour and a half. My "sleep hygiene" is excellent. Sleep meds either stimulate me, or do nothing for sleep but make me groggy the next day.

    Does anybody else have this pattern?
     
  8. Beyond

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

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    I do wake up from 2 to three times per night, so I have a lesser degree of what you have. I have found that eating gluten and casein doubles my awakenings, to 4-6 per night. I hope melatonin and GABA help with this... and especially unrefreshing sleep
     
  9. madietodd

    madietodd Senior Member

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    I'm on the Wahls diet, which is basically non-starchy vegetables, fruits, fish, and meat.

    Good luck with the melatonin and GABA!
     
    Beyond likes this.
  10. Dreambirdie

    Dreambirdie work in progress

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    I have a similar, but not exactly the same, pattern. Same as you, I have excellent sleep hygiene, no pain, never nap. Being creatively inclined, I am always working on one music/writing/art project or another, and that sometimes gets the wheels turning in my head at night, so I make sure I write down all my ideas BEFORE I go to sleep. This definitely helps.

    I have no problem going to sleep as long as I take my magnesium, progesterone and tryptophan before bed. If I'm not toxic (from an external toxic exposure or a detoxification reaction), then I sleep fairly okay until about 3, after which time I begin sleeping very shallowly and waking up every half hour or so. In Chinese medicine, the time btwn 3-5 am refers to the lung, which correlates to the immune system. My thought is that the viruses in my system are interfering with my sleep at that time.

    If I am toxic, then I begin to wake up at 1-3 am, which correlates to the liver. I have learned to take a high dose of NAC before bed on the nights after a toxic insult, as that usually gets me through those hours without as much wake up. I have not, after many thousands of dollars spent looking for it, found the answer for the 3-5 wake up. If I could figure that out, it would change my life.
     
    Beyond likes this.
  11. Beyond

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

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    I didn´t find tryptophan useful, though I was using a very crappy spanish brand.You cannot trust these lol I´ve been tested and I am defficient. I did find out that 5-HTP makes me wake up in the middle of the night with major anxiety because of not remembering who or where I was.

    Magnesium citrate I don´t recall it being useful either, and that was Thorne. It made me less constipated though.
     
  12. leokitten

    leokitten Senior Member

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    I know you guys are going to hate me for saying this, but as a biologist and scientist I must since I know this area of medicine quite well.

    Benzodiazepines (Xanax, Valium, Klonopin, etc.) are some of the most damaging drugs there are, literally as addictive as hard street drugs and cause just as much if not more brain damage. This is based on well established research dating back to the 1970s and there is no question about this. I don't have the time now to pull all the PubMed and scientific magazine articles out for you but will do so if you really need me to.

    Just search "brain damage benzodiazepines" and you will see at least what news has been posted on the web for years about this problem. Here's one http://www.psychologytoday.com/blog...he-troubling-facts-risks-and-history-minor-tr

    http://en.wikipedia.org/wiki/Effects_of_long-term_benzodiazepine_use

    Long-term benzodiazepine use even in small doses causes irreversible brain damage in term of loss of gray matter in addition to major negative functional changes within the brain that do not really revert back to normal upon cessation.

    Long-term benzodiazepine causes approximately the same annual neuronal loss and decrease in brain volume as an alcoholic's brain does with alcohol (which is A LOT)

    Very importantly for CFS sufferers read in the above Wikipedia article:

    Benzodiazepine use can cause immune and endocrine dysfunction which is the last thing a CFS sufferer needs!

    In addition to obvious and measurable morphological changes such as brain volume, benzodiazepines seem to cause a lot of damage that is not easy to see. Long-term benzo use causes Post acute-withdrawal syndrome which includes a host of symptoms which are not good for CFS sufferers:

    And on top of this all of you know the benzos just stop working at the same dosage after a while and you need more and more and then they stop working again.

    It's just not worth it in my opinion all the permanent damage for the very limited benefit. You will just make your CFS symptoms worse and bring new ones during long-term use.

    Anyway, I hope my plea to people on this forum gets heard
     
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  13. Tammy

    Tammy Senior Member

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    google 5htp safety and cycling.........will find a member's response as to the time of day 5htp should really be taken (her opinion)
     
    Last edited: Nov 3, 2013
    Beyond likes this.
  14. JT1024

    JT1024 Senior Member

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    I agree with leokitten regarding the damage of benzo's. Unfortunately, I've been on them for many years for sleep issues.

    Since two of my doctors both wanted me off of the clonazepam, I recently reduced my dosage but I know I need to go slow. My rheumatologist prescribed Hydroxyzine and it is helping. I also take trazadone - 1/4 of a 50 mg tablet. The trazadone keeps me asleep.
     
  15. leokitten

    leokitten Senior Member

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    I can't state it more strongly that what I wrote is not opinion but well-established scientific fact, benzos are so so damaging and should ever only be used short term.

    If I had a choice I would say they should never be prescribed to anyone except for the most extreme cases like to calm violent/psychotic people. Even people with anxiety for which benzos were originally presribed they just make the anxiety worse in the end.
     
    Sparrowhawk likes this.
  16. leokitten

    leokitten Senior Member

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    They are making your sleep issues worse for sure. I would go on a program to taper off of them slowly but start ASAP.
     
  17. maryb

    maryb iherb code TAK122

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    @leokitten
    do you think clonazapam is worth taking nowand then to get the occasional nights sleep. I've never taken a benzo.
     
  18. leokitten

    leokitten Senior Member

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    Clonazepam IS a benzodiazepine, it is the generic term for Klonopin.

    No it is not safe and I would never take these medications even occasionally. They are SO addictive and I've see in hospitals and been told by my medical colleagues that it can be harder to get someone off benzos than off of heroin and cocaine and they can cause more damage. I'm not kidding.
     
    Beyond likes this.
  19. maryb

    maryb iherb code TAK122

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    @leokitten
    I know its a benzo thats why I've hesitated until now - but when you're desperate for sleep??????
    I wouldn't take it ever night - perhaps once a fortnight. I guess you are so against them you wouldn't.
     
  20. leokitten

    leokitten Senior Member

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    Every single person I know of from the clinical side in hospitals and in personal life always started their benzo use that way. Just once here and there, then very slowly it creeps up on you and you start breaking the rules you made about taking them because they seem to work so well and make you feel better (or so it seems for a while) until after some time you are taking it all the time and more and more of it.

    They are simply extremely addictive drugs, just as addictive as heroin, cocaine, amphetamine and it is literally impossible for most people to do those drugs just once in a while. After time, it creeps up on you and you become thoroughly addicted.

    You will thank me for taking this advice, trust me. There are better ways to solve your sleep issues. Otherwise you will be dependent on them eventually, they will permanently damage you and make your CFS and sleep worse, and if you want to quit it will be one of the most painful and difficult things you have done in your life.
     
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