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Sleep meds poll

Discussion in 'Sleep Disturbance' started by Sarah94, Nov 13, 2020.

?

Do you (or your loved one who has ME) take any of the following medications to help with sleep?

  1. Amitryptiline or nortriptyline

    6 vote(s)
    9.8%
  2. Trazodone

    3 vote(s)
    4.9%
  3. Zopiclone or zolpidem (ambien)

    12 vote(s)
    19.7%
  4. Diphenhydramine (Nytol, Benadryl), hydroxyzine, promethazine (Phenergan), or other antihistamine

    8 vote(s)
    13.1%
  5. Mirtazapine

    5 vote(s)
    8.2%
  6. Prescription melatonin

    6 vote(s)
    9.8%
  7. Other medication not listed here

    11 vote(s)
    18.0%
  8. I would like to take sleep medication but can't get my doctor to prescribe it

    3 vote(s)
    4.9%
  9. I don't take sleep meds and don't wish to

    15 vote(s)
    24.6%
  10. I don't take any sleep meds because I tried them and had bad side effects

    5 vote(s)
    8.2%
  11. Sodium oxybate (Xyrem)

    0 vote(s)
    0.0%
  12. Benzodiazepines (E.g. clonazepam, lorazepam)

    3 vote(s)
    4.9%
  13. Agomelatine

    0 vote(s)
    0.0%
  14. Tiagabine

    1 vote(s)
    1.6%
  15. Belsomra, or other orexin antagonist

    0 vote(s)
    0.0%
Multiple votes are allowed.
  1. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,443
    Location:
    UK
    Just curious, especially because the draft nice guidelines don't say anything about sleep medication.

    Please tell me if there's an option that I should have included but forgot.
     
    Last edited: Nov 13, 2020
  2. Trish

    Trish Moderator Staff Member

    Messages:
    37,525
    Location:
    UK
    I don't fit any of those categories. I don't take sleep meds because having tried tiny doses of amitryptiline, and felt so awful I couldn't persevere, and having reacted badly to some other meds in the past, I have decided to do without and put up with disordered sleep.

    I don't think the last option fits - I would like a sleep med that worked and didn't leave me feeling extremely nauseous and like a zombie.
     
  3. Fizzlou

    Fizzlou Established Member (Voting Rights)

    Messages:
    53
    Location:
    Cheshire
    Trazodone helped for 6 months then stopped. Even with a break there’s no effect now. Any thoughts?
     
    alktipping and Kitty like this.
  4. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,443
    Location:
    UK
    I'll make another category Trish, thanks for the feedback
     
  5. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,311
    I take Circadin (prescription melatonin) on a private prescription.

    I tried everything listed over the years and most of it caused insomnia and horrible hangovers - even the stuff that isn't supposed to cause hangover.

    Circadin isn't a magic bullet. You do have to help it along and avoid caffeine and doing anything that might overstimulate the brain and so on. It is very helpful though & so I keep paying for it.
     
  6. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    9,049
    Location:
    UK West Midlands
    I take over the counter melatonin I buy from the USA


    I have to be careful with or preferably avoid anything sedating as I really get knocked out by them and also the hangover persists
     
    Last edited: Nov 13, 2020
    alktipping, Kitty and Sarah94 like this.
  7. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,322
    Location:
    Cornwall, UK
    I take medications for a maximum of 3 days in a row, and then switch to another. The ones I take are:

    Promethazine
    (sometimes) diphenhydramine
    cetirizine (antihistamine)
    chlorphenamine (antihistamine)
    paracetamol & codeine (usually only one nowadays as causes constipation)

    Sometimes they don't work, but usually/often they do.

    I often take some marijuana as well, which helps a lot - usually twice a night.

    I suspect that the advice to take most things continuously is just to maintain market-share?
     
    Last edited: Nov 14, 2020
    alktipping and Kitty like this.
  8. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

    Messages:
    324
    I take sleep meds, but switch on alternate nights. One night I'll take 50 MG of Trazodone, and the next I'll take 15 MG of Belsomra, and on like that. Some people seem to be able to take the same sleep med night after night, but I've found that doing that usually causes the med to lose effectiveness.

    The one exception in my experience was Xyrem (sodium oxybate). I took that every night for a long time with good effect, and, when I got off it, I had no withdrawal.
     
    alktipping, Kitty and MeSci like this.
  9. Braganca

    Braganca Established Member (Voting Rights)

    Messages:
    66
    I take .25mg Lorazepam..
     
  10. Creekside

    Creekside Senior Member (Voting Rights)

    Messages:
    246
    With any of the sleep meds, I'd worry about dependency.
     
    Chezboo, alktipping and Kitty like this.
  11. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    2,476
    Location:
    UK
    Me too, so I went for 'other medication not listed here'.

    I don't take it all the time, only for a few days at a time to re-set my sleep pattern once it's drifted so far towards day/night reversal yet again. It does seem to work, provided I keep the dose to around 1mg (higher doses, e.g. 5mg tablets, paradoxically have no effect at all).
     
    alktipping and NelliePledge like this.
  12. leokitten

    leokitten Senior Member (Voting Rights)

    Messages:
    793
    Location:
    U.S.
    generalize ambien to “nonbenzodiazepine z-drugs” as there are many like Lunesta and others and they all work the same way.

    add benzos option (like klonopin, clonazepam, lorazepam)
    add tiagabine (GABA reuptake inhibitor) option
    add orexin antagonists option (like Belsomra)
    add agomelatine option (melatonin receptor agonist and specific serotonin receptor antagonist)

    this will help reduce use of option not listed here as ideally you want none of those
     
    Last edited: Nov 13, 2020
    alktipping, Sarah94 and Jaybee00 like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    9,049
    Location:
    UK West Midlands
    Yes I take the 1mg too
     
    alktipping likes this.
  14. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    878
    Ummm you forgot the gold standard.

    https://www.drugs.com/comments/secobarbital/

    A perfect 10/10 rating.

    Physicians are so scared to prescribe this stuff, probably to the detriment of many patients.

    What is the status of barbiturates in the UK/EU? (E.g., very rarely prescribed, etc.)
     
    Last edited: Nov 13, 2020
    alktipping likes this.
  15. leokitten

    leokitten Senior Member (Voting Rights)

    Messages:
    793
    Location:
    U.S.
    Also add Xyrem (sodium oxybate) as an option a few ME doctors prescribe it
     
    alktipping and Sarah94 like this.
  16. leokitten

    leokitten Senior Member (Voting Rights)

    Messages:
    793
    Location:
    U.S.
    The problem with barbiturates (and why they were eventually replaced by benzos many years ago) is that they have an even higher abuse potential than benzos on top of the fact that it’s really hard to dose right for each person, even small doses and just a little over and you can easily put them in a coma or kill them. With benzos it’s not the case.
     
    Wits_End, alktipping and Sarah94 like this.
  17. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,443
    Location:
    UK
    Ok will do
     
    alktipping likes this.
  18. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,322
    Location:
    Cornwall, UK
    That's one reason why I take them in sequence, then you can't get dependent. (I know about dependency - I got badly addicted to amphetamine - terrible time, lost my job, etc.)
     
    alktipping likes this.
  19. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,443
    Location:
    UK
    I don't think anyone gets prescribed barbiturates outside of end-of-life care. In the UK
     
    alktipping likes this.
  20. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,443
    Location:
    UK
    @perchance dreamer @Braganca @leokitten I have added additional options to the poll, so you may wish to update your choices (and, if appropriate, remove your vote from 'other med not listed here')
     
    alktipping likes this.

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