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MEA website question for October: Melatonin for sleep disturbance

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 2, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    MEA website question for October: Melatonin for sleep disturbance

    Why are we asking about the use of melatonin for sleep disturbance in this month's MEA website survey:

    http://www.meassociation.org.uk/201...n-this-months-website-survey-02-october-2017/

    Vote via the home page on the MEA website:
    www.meassociation.org.uk

    Current voting:
      • Have you used melatonin to help with a sleep problem in ME/CFS? If so, was it helpful?
        • Very helpful (21%, 13 Votes)

        • Of some help (8%, 5 Votes)

        • No effect (13%, 8 Votes)

        • Made worse (5%, 3 Votes)

        • Made much worse (3%, 2 Votes)

        • Not used melatonin (51%, 32 Votes)

    Overseas votes are welcome in this month's survey

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. Invisible Woman

    Invisible Woman Senior Member

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    As per usual there's always an awkward sod.....& I'm told it's usually me:

    @charles shepherd - I think it's worth distinguishing between prescription versions such as Circadin and herbal ones.

    In my own case herbal ones do absolutely nothing but Circadin does help if I'm careful what time I take it, not do anything too exuberant (as if!) between taking it and bed etc.
     
    ryan31337 likes this.
  3. Hutan

    Hutan Senior Member

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    Before giving children and adolescents melatonin please be aware of the following view:

    (copied from previous posts)
    Here's Professor Kennaway's paper. He is a well respected scientist working on reproductive biology in domestic animals and has substantial experience with melatonin.

    http://onlinelibrary.wiley.com/doi/10.1111/jpc.12840/full
    Potential safety issues in the use of the hormone melatonin in paediatrics
    1. David J Kennaway1,2,*
    Article first published online: 3 FEB 2015

    Melatonin is a hormone produced by the pineal gland during the night in response to light/dark information received by the retina and its integration by the suprachiasmatic nucleus. When administered to selected populations of adults, in particular those displaying delayed sleep phase disorder, melatonin may advance the time of sleep onset. It is, however, being increasingly prescribed for children with sleep disorders despite the fact that (i) it is not registered for use in children anywhere in the world; (ii) it has not undergone the formal safety testing expected for a new drug, especially long-term safety in children; (iii) it is known to have profound effects on the reproductive systems of rodents, sheep and primates, as well as effects on the cardiovascular, immune and metabolic systems; and (iv) there is the potential for important interactions with drugs sometimes prescribed for children. In this review, I discuss properties of melatonin outside its ability to alter sleep timing that have been widely ignored but which raise questions about the safety of its use in infants and adolescents.
    ...

    While it can be misleading to compare doses of drugs that have physiological outcomes in animals with those administered to humans, it is important to recognise that the doses used in the rodent and primate experiments which had physiological effects are well below the doses currently administered to children with sleep disorders (i.e. a 3-mg melatonin dose equates with 200 μg/kg for a 15-kg child and 60 μg/kg for a 50-kg child). The role of melatonin in reproductive processes was reviewed in 1980[15] and again in 1991[16] by the same author. In the 1991 review, Russell Reiter wrote, ‘In particular, melatonin as a mediator of photoperiodically induced changes in pubertal development and seasonal reproduction in nonhuman mammals has been repeatedly confirmed. Considering the pronounced effects of the pineal gland and melatonin on reproductive physiology in these nonhuman mammals, to assume they would not have some sexual effects in humans would almost seem naive.Whereas only 30 years ago the pineal was generally considered to be vestigial, it now appears it may be functionally involved with every organ system in the body.’[16] Subsequent research supports the widespread influence of melatonin on a wide range of physiological systems.[17]


    https://www.adelaide.edu.au/news/news76502.html

    Warning on use of drug for children's sleep
    Wednesday, 25 February 2015

    Sleep researchers at the University of Adelaide are warning doctors and parents not to provide the drug melatonin to children to help control their sleep problems.
    ...
    In a paper published in the Journal of Paediatrics and Child Health, Professor David Kennaway, Head of the Circadian Physiology Laboratory at the University of Adelaide's Robinson Research Institute, warns that providing melatonin supplements to children may result in serious side effects when the children are older.
    ...
    "Melatonin is registered in Australia as a treatment for primary insomnia only for people aged 55 years and over, but it's easily prescribed as an 'off label' treatment for sleep disorders for children."
    ...
    Professor Kennaway says there is extensive evidence from laboratory studies that melatonin causes changes in multiple physiological systems, including cardiovascular, immune and metabolic systems, as well as reproduction in animals.
    ...
    Professor Kennaway, who has been researching melatonin for the past 40 years, says these concerns have largely been ignored throughout the world.
    ...
    "Considering the small advances melatonin provides to the timing of sleep, and considering what we know about how melatonin works in the body, it is not worth the risk to child and adolescent safety," he says.
     
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  4. charles shepherd

    charles shepherd Senior Member

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    Thanks for the very interesting information on the use of melatonin in children

    I will certainly raise this with NICE when discussions commence on the update/revision of the 2007 NICE guideline on ME/CFS, especially in view of the fact that NICE states that the use of melatonin should be considered for children with ME/CFS who have significant sleep problems…...

    CS
     
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  5. charles shepherd

    charles shepherd Senior Member

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    Sorry - no can do!

    The tool that we use for these MEA monthly surveys does not allow for either complex questions or answers

    We are going to conduct a more detailed survey later in the year…

    CS
     
    Orla and Invisible Woman like this.
  6. anni66

    anni66 mum to ME daughter

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    Melatonin is not the script of choice for GPs. Amitrypyline is the go- to first choice from those i know. Must be a better class of golf outings ...
     
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  7. Hutan

    Hutan Senior Member

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    Thank you Dr Shepherd, much appreciated.

    My son attended the Fatigue Clinic at the Royal Children's Hospital in Melbourne for a 40 minute appointment. He was diagnosed with CFS, prescribed ritalin and melatonin and told to come back in 4 months. This, despite the fact that he had no problem sleeping, just a bit of a skewed timing, and no symptoms of ADHD.

    He tried ritalin - it had no effect on the ME symptoms. He didn't try the melatonin.

    I think there needs to be much more thought given before these significant drugs are handed out to children like lollies. If prescribed, there needs to be a commitment to careful followup, not least so that drugs that aren't helping aren't used unnecessarily.
     
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  8. Orla

    Orla Senior Member

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    I found it good for getting me off to sleep. But unless it was a dual/long release I would wake up after a few hours.

    I got on very well on a low dose for years (I had managed to reduce my dosage to 1/8 of a 1mg tablet). I was taking melatonin for a few years.

    But then I started waking up early again. I didn't think it was anything to do with the melatonin initially but now I think it might so I avoid it now, but I still take it sometimes if I am still wide awake at 4am. I did find it I take it very late like this that it normally doesn't cause me to wake early. The waking up early might not be just down to the melatonin, but it seems worse if I take it for a few days or before 3am.

    So I answered that it was of some help. But in reality it helped a lot for a good few years, but then caused some issues (maybe).
     
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  9. charles shepherd

    charles shepherd Senior Member

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    No golf outings for prescribing amitriptyline - it is a very cheap generic drug!

    CS
     
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  10. NelliePledge

    NelliePledge plodder

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    Would be great if Melatonin could be added to NICE guidelines so at least we could get the option of seeing if it helps - amitryptiline stopped working for me and I had no option but to change to nortryptilne. Neither has been that effective at helping me get off to sleep which is my main issue.
     
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  11. anni66

    anni66 mum to ME daughter

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    Thanks Charles -it was a bit of tongue in cheek given some of the recent revelations on psych drug market. Our problem with most drugs is benzoate/ salicylate sensitivity. Colours are a bit of a nightmare...
     
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  12. Stretched

    Stretched Senior Member

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    I think M needs to be compared to other rx’s or methods of getting to sleep.

    Take 1 Ambiem or other z-pill and it will knock you out, initially, but they only have a +/- 2 hour half life. After awhile one builds a tolerance and a single dose gradually becomes ineffective.

    Then compare the affect of getting to sleep by pill using Melatonin and it, M, is almost a waste of time and money for sleep, or even for relaxation. They’re Apples and oranges - M may help with circadian rhythms and retinal sensitivities to light and dark but IMHO, it’s best use is for stomach and gut affects.
     
  13. Wayne

    Wayne Senior Member

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    I use 3 mg of melatonin nightly, and feel it's quite helpful, even though I still don't sleep particularly well. I just received an email from my brother this morning (below) that's got me thinking about upping my dosage from 3 mg to 10 mg. -- Also, I recently saw a reference to melatonin mentioning that the "form" is very important. If anybody has any information on different forms of melatonin, I'd be interested...

    Email from my brother...

    I had an interesting experience at wal-mart last week. I was in an aisle and just couldn’t find melatonin. I was the only one there when I heard a child in the aisle behind mention melatonin to his mother. I questioned my ears a little bit and then they appeared in my aisle.

    The friendly mother helped me find it and continued to show me where it was and that her child took the 10 milligram type otherwise he sleep walks at night. I bought the 10 milligram tabs and think it’s helping me sleep better and hopefully I can begin to reduce my klonapin usage.​
     
  14. Kenny Banya

    Kenny Banya Senior Member

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    Circadin used to be very effective for me in my mild CFS days.
    Now, during my moderate CFS Phase, it has absolutely no effect. I take a very small quantity of doxylamine which is pretty effective.
     

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