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Amitriptyline Poll - Does it work for you?

Discussion in 'Sleep' started by mattie, Sep 9, 2016.

?

Do you currently use Amitriptyline for sleep?

  1. Yes, and its great!

    10.9%
  2. Yes, and it works a little for me

    6.3%
  3. Yes, and it works but I dont like the side effects

    7.8%
  4. No, i have tried it but it did nothing for my sleep

    6.3%
  5. No, it worked for me but I had to stop because of the side effects

    14.1%
  6. No, never tried it

    20.3%
  7. No, it did not work AND I had nasty side effects

    34.4%
  1. mattie

    mattie

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    Hello all,
    I'm new here and this is my first thread. Hope I put it in the right place.

    Beginning of 2016 I was diagnosed with ME/CFS and POTS. Also suffer from severe sleep disturbance which contributes heavily to my symptoms.
    Tried all the OTC options for better sleep, none of them worked for me.
    Ambien worked but gave me horrible side effects and severe inter-dose withdrawal.
    Benzos work a bit but are definitely no long term solution.

    After having a sleep study here in the Netherlands I have been prescribed Amitriptyline 10mg by the neurologist / sleep specialist. She told me this is currently the medication of choice and the most effective medication for staying asleep longer and improving deep sleep cycles.
    But... I've also read about some PWME that had serious adverse reactions, even permanent damage.

    So:
    Have you tried amitriptilyne?
    Did it help or not?
    How about the side effects?

    Besides the poll I would love to hear from your experience with amitriptyline.
    My doc says it has really helped about 65% of her patient population.
    I would really like to know if this goes for PWME too...
     
    Last edited: Sep 9, 2016
  2. Living Dead

    Living Dead Senior Member

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    This is contraindicated for ME/CFS for three reasons:
    1. Probably messes with NO production
    2. Increases muscle tension
    3. Creates restlessness

    Obviously, not all patients will get the negative effects, but there are good reasons not to try this medication when there are other options. I've read about people who claim it helps them, however, later, in a different topic, one reported that their condition is gradually worsening...

    Have you tried Alimemazine? It is the first thing that's usually tried here. Not that effective, but no obvious potential for harming ME/CFS patients. First do no harm.
     
    Invisible Woman likes this.
  3. mattie

    mattie

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    Thanks for your reply.
    Unfortunately my prescribing "specialist" has no experience at all with ME/CFS.
    If these unwanted side effects you describe would subside shortly after quitting a trial I would still be willing to give it a go.
    Also will look into Alimemazine, thanks for the tip.
     
    Last edited: Sep 9, 2016
  4. Cheesus

    Cheesus Senior Member

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    Amitriptyline works like a treat for my sleep. I used it for around 2 years straight, but then managed to wean myself of it as I felt I could sleep independently, and now I only take it whenever I am in a state of PEM and know I will have trouble sleeping.
     
  5. Cheesus

    Cheesus Senior Member

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    Why would it do that?
     
  6. mattie

    mattie

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    Thanks Cheesus!
    Side effects not too bad either? And did it work straight away?
     
  7. John Mac

    John Mac Senior Member

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    It works well for me. The couple of times I've forgotten to take it I ended up at 3am wondering why I can't sleep.
    It's black and white for me, if I take it I sleep, If I don't take it then I won't sleep.
     
    Mrs Sowester and mattie like this.
  8. taniaaust1

    taniaaust1

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    Im one who suffered some severe damage from this drug. I advise anyone who has CCC defined ME/CFS not to trial it (i was only trialing it low dose when it harmed me and I know of 2 others at this forum it did "permanant" damage too but in their case it damaged their bladders (frozen bladders) and not their bowel like it did to mine.

    Note these complications from this drug may not subside if you have these, the 2 with frozen bladder from it didnt and I was left for over year with major issues after taking it (maybe 2 years) and almost needed surgery due to it (to repair my bowel). The bowel peristalisis it stopped didnt come right back on stopping this drug, damage for a long time.

    this drugs complications prolapsed my bowel as it has the pharmalogical affect of slowing up bowel peristalisis (that was on wikipedia) , it stopped my bowel from working.. which ended up leading to a prolapsed bowel in my case (mine prolapsed into my vaginal area and then was showing out of there).

    also when another website collected ME peoples responses to this drug, this drug was one of the ones which had the most problems when compared to the other drugs many of us take for our ME problems.

    I havent heard of any other drug here having such major complications in those here (we've had a couple here end up needing rehab for benzos but other then that I havent heard of drug here in several of us other then this one causing major body damage).

    and to top that off, it didnt even help my sleep, it had no affect on that at all.
     
    Last edited: Sep 9, 2016
    Basilico and Invisible Woman like this.
  9. Invisible Woman

    Invisible Woman Senior Member

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    It's probably my brain fog but..:

    There's no option in the poll for "No, it didn't help me sleep (in fact it made my sleeping much, much worse) and the side effects were are real problem."
     
    mattie likes this.
  10. mattie

    mattie

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    just added that option, thank you.
     
    Invisible Woman likes this.
  11. Living Dead

    Living Dead Senior Member

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    2. Because it stimulates serotonin.
    3. Because it stimulates serotonin and adrenaline.
     
  12. Cheesus

    Cheesus Senior Member

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    Yeah it worked the first night. The side effects are tolerable. At first you will likely have a dry mouth but that subsides after a while. When I was taking higher doses of 30mg I started getting sleep paralysis which was really unpleasant, but that went away when I lowered the dose. I now take 5mg whenever I need it.

    If you use it over a long period of time you will need to taper down slowly otherwise you will have rebound insomnia.
     
    mattie likes this.
  13. Cheesus

    Cheesus Senior Member

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    It is licensed as a muscle relaxant and for use in helping people sleep. I have never experienced tension or restlessness - quite the opposite!
     
    mattie likes this.
  14. Hip

    Hip Senior Member

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    My mother, who does not have ME/CFS but suffers from insomnia, finds amitriptyline 10 mg great for sleep, but she says the downside it that it makes her feel depressed for the first few hours after getting up in the morning. Apart from that side effect, it works well for her insomnia, and does not have the tolerance and addiction properties of benzodiazepines or Z-drugs.

    I sometimes use amitriptyline or imipramine (imipramine is another tricyclic antidepressant with lower side effects than amitriptyline) for my comorbid depression. It does help a little, but I find it kind of only makes half of my brain happy, and the other half remains depressed. More specifically, I find amitriptyline seems to make the perception part of my mind happy (the part of my mind that processes immediate sensory perception), but the more reflective part of my mind remains depressed. It's hard to describe, but it is not a balanced mood boost, but a skewed one, which feels odd, especially if I take higher doses.

    So what I end up doing is just taking very low doses of amitriptyline, typically a quarter or an eighth of a 10 mg tablet.

    I have not yet found an antidepressant that works for my comorbid depression.



    Note that tricyclic antidepressants may reduce vitamin B2:
    Source: 1.

    Taking vitamin B6 with tricyclic antidepressants may improve their effectiveness:
    Source: 1

    Taking N-acetyl-cysteine with imipramine improves its effectiveness (so that you can reduce its dose):
    Interactive effects of N-acetylcysteine and antidepressants


    For sleep purposes, apparently amitriptyline is taken 5 hours before going to bed:
    “A Prescription For Sleep”: Sleep Drugs For CFS and FM



    I find the supplement pyrroloquinoline quinone (PQQ) 20 mg before bed effective for deepening sleep, and making sleep more restful, but I find for me PQQ does make my dreams very slightly more vivid / disturbed.

    This study found that PQQ helped fatigue, tension-anxiety, depression, anger-hostility and confusion, appetite, sleep, obsession and pain, with the full effect appearing after 8 weeks supplementing daily with 20 mg of PQQ.
     
    Last edited: Sep 9, 2016
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  15. Kina

    Kina

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    I tried it ages ago for sleep. I took a very tiny dose and it did help me sleep but the next day I would feel extremely drowsy for the whole morning. I guess I would call it an amitriptyline hangover. I also experienced extreme dryness of the mouth and eyes. I had to stop taking it as a result.

    I know a few people that found it really helpful so I guess the only way to know how you will respond to it, would be to try it yourself. The people I am talking about did not have ME, they had insomnia only. They also weren't hypersensitive to chemicals/meds either.
     
    Invisible Woman and mattie like this.
  16. Living Dead

    Living Dead Senior Member

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    Where is it licensed as muscle relaxant? It is not here. After quite a bit of googling, I am also quite sure it is not in the US either.

    It could relax muscle due to being an mACh receptor antagonist, but if that's what you want, why not chose a medication that does it without the SNRI effects, such as doxylamine?

    You say in your post above that you take 5 mg. This is an ultra-low dose, so you're unlikely to get the side effects that people get on higher dosages. Even 30 mg is a low dose.

    I'm not saying this is the wrong medication to use. But, in my opinion, prescribing amitriptyline without first trying alimemazine and doxylamine is just plain wrong. Doctors should always try the "milder" medications first, even though they may have less potential for working. This applies in all circumstances. First do no harm.
     
  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This is exactly how it affected me.

    If amitriptyline is prescribed in capsule form, you could empty the contents into a measured amount of juice, and take half of the measured liquid in order to give yourself 5mg. This might be advisable for the first night. The first day's hangover is always the worst.

    My favorite medication for sleep is paroxetine (Paxil in the US). 5mg is adequate; 10mg is the usual dose. I don't take it now because it dries out my eyes too much and raises my blood pressure (something that didn't happen years ago). If someone with CFS were to ask me which medication to try first for sleep, I would suggest this.

    Some people do well on trazodone. It was OK for me years ago, but now it causes orthostatic intolerance.
     
  18. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    @Living Dead, is Alimemazine used for improving deep sleep cycles?
     
  19. Living Dead

    Living Dead Senior Member

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    No, it's just used for sleeping. I don't think it's known how it affects deep sleep cycles.
     
  20. Sean

    Sean Senior Member

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    Not for sleep, as such. But I get some lower back pain on and off, since long before getting ME, and it can help a lot with that pain, quickly too. Maybe average 20-30 mg a week in 10mg doses, as needed, anytime of day. Sometimes don't take any for weeks at a time.

    If I take it every day I start piling on the weight, and getting pointy boobs, which is not so cute on a middle aged male.

    o_O :meh:
     
    Valentijn likes this.

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