1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Use of antidepressants for ME/CFS?

Discussion in 'Drug and supplement treatments' started by Hutan, Feb 1, 2019.

  1. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,277
    Location:
    UK West Midlands
    Ah I’ve not had experience of the waking up regularly type insomnia you describe. Sending best wishes I hope the medication does begin to help. And try to be as compassionate to yourself as you would to another person with this illness. :hug:
     
    Hutan, alktipping, ringding and 3 others like this.
  2. ringding

    ringding Senior Member (Voting Rights)

    Messages:
    409
    Location:
    Bristol, UK
    Just as a quick update, I stuck with the amitripi-wotsit for another week and then took myself off it. My sleep then got worse and I realised that a lot of the pain in my legs and arms had gone away whilst I was on it. My HR hasn't dropped so it wasn't causing that. I'm giving it a few weeks without it but will probably give it a go again if I can't find away of 'solving' my sleep issues without it (or get fed up with feeling like I spent the last few days working on a chain gang). In short, it was doing what it should do for me and with no apparent side affects (once the dry mouth had gone).
     
  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,095
    Location:
    UK
    I think blackmailing patients to take drugs is despicable and ought to be a crime.
     
  4. ringding

    ringding Senior Member (Voting Rights)

    Messages:
    409
    Location:
    Bristol, UK
    @Arnie Pye the Dr in question is the most unsympathetic and unempathic GP I've ever met. Fortunately, whilst he's 'my' GP I can make appointments with others at the practice and have found one who is most definitely on my side and isn't bought into the BPS cult.
     
    Hutan, alktipping, Wits_End and 6 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,277
    Location:
    UK West Midlands
    Maybe ask if you can try nortryptiline it’s supposed to be less of a sedative hangover.
     
    alktipping and ringding like this.
  6. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,921
    Location:
    Aotearoa New Zealand
  7. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,330
    Does the impact of anti depressants vary with degree of severity?
    If you have less energy/ body resources to deal with side effects, does that make them greater?
     
    alktipping likes this.
  8. Wits_End

    Wits_End Senior Member (Voting Rights)

    Messages:
    1,342
    Location:
    UK London
    And here's me wondering whether my caree might do better reverting to one of the -triptylines than she currently is on the mirtazapine! Horses for courses, I guess ...

    (Edit: oops, that's in response to some rather old postings - should have checked before I posted)
     
    alktipping and ringding like this.
  9. ringding

    ringding Senior Member (Voting Rights)

    Messages:
    409
    Location:
    Bristol, UK
    Had an appointment with the GP last week, she was great as usual. Have agreed to try the ami-stuff again as my sleep is awful, and to stick to it for a couple of months (unless any serious side affects of course). She has also prescribed me some beta-blockers to help manage the heart rate issues (which I seem to get anyway even when not on amy-stuff).
    Will see how it goes this time.
     
    Hutan, alktipping, MEMarge and 4 others like this.
  10. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,732
    If you feel groggy in the morning, try taking it earlier in the evening. I find two hours before bed is about right (its sedative effect usually lasts 10 hours, but if it's lasting longer for you take it even earlier).

    The side-effects should lessen after a while too, as your body adjusts to the medication.
     
  11. ringding

    ringding Senior Member (Voting Rights)

    Messages:
    409
    Location:
    Bristol, UK
  12. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,921
    Location:
    Aotearoa New Zealand
    This tweet by the UK Royal College of Psychiatrists about their realisation that there is an antidepressant withdrawal syndrome and that it can last several years was posted by @rvallee on another thread:
    https://twitter.com/user/status/1407271729962045442


    (edited to explain tweet in case the link is broken.)
     
    Last edited: Jun 24, 2021
    Ali, alktipping, rvallee and 3 others like this.
  13. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,095
    Location:
    UK
    Wow. Impressed by the RCP I am NOT!

    How many years have they been ignoring patients on this subject, I wonder?
     
    Lou B Lou, alktipping, V.R.T. and 3 others like this.
  14. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Decades.

    An ME patient I met was sectioned for comorbid mental health problems, though of course as far as the psychs were concerned it was all down to his mental health.

    His meds caused him some agitation that could only be eased by constant movement, rocking, pacing the corridor etc. He got no peace sitting still.

    He merely asked if they could adjust his dose or if there was an alternative drug he could try.

    They threatened him, just take them, if you don't we say you're resisting treatment and then instead of giving you a nice tablet we'll hold you down and inject you.

    Because mental health conditions can make some patients non compliant with meds some of the time, some mental health professionals extrapolate this to all patients. Therefore it cannot be the medication, it's the patient.

    If it cannot be the medication then it doesn't matter whether it's prescribed for a mental health condition or ME. The medication isn't the problem it's the patient.

    :banghead:
     
    Lou B Lou, alktipping, V.R.T. and 6 others like this.
  15. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,095
    Location:
    UK
    I've had this reaction to metoclopramide. The first time I was given it was as an anti-emetic during surgery in the mid-90s being done in the private sector. I had no problems with movement before the surgery started but I did as soon as the paralysis was reversed. They couldn't say it was a psychiatric problem under those circumstances. The anaesthetist told me after I recovered that I was allergic to a drug called "Maxalon" which was the commercial name of the drug, not it's "real" name - but I didn't know that for 20 years. Another thing about this that really annoyed me was that the anaesthetist decided that this wasn't her problem, gave me a small scrap of paper with the name Maxalon on it, and never bothered to notify my GP.

    Twenty years after this first use of metoclopramide/Maxalon I was given a prescription for metoclopramide by a gut doctor. She told me it would help with making my gut work more smoothly and reduce pain. I didn't know it was Maxalon. I was supposed to take one tablet three times a day. I took full dose the first day, felt very strange by the evening and decided to take just one tablet the second day, and the third day. Then the twitching and restlessness started. I was fighting my own muscles to make them do what they were supposed to do (and failing). I was marching throughout the house unable to rest. When I sat down I would start drumming my feet on the floor, and could only sit for a few seconds. The muscles in my face were twitching to the extent that I looked like I was gurning. But the worst of all was that I became totally suicidal after just those five pills.

    I got an emergency appointment to see my GP and she prescribed an antidote - I think there are a few available, and I don't remember what I was given. It worked fairly quickly - took about 2 days for the worst of the more visible symptoms to disappear. But it took about three months for the mental symptoms to completely go away.

    The root of the problem with metoclopramide is that it is a dopamine-receptor antagonist - it binds to dopamine receptors and prevents dopamine from being used in the way it should. It will make existing Parkinson's Disease (which I don't have) much worse.

    When I read about the effects of low dopamine I wonder how much it has been affecting me throughout life, and whether I am doomed to develop Parkinson's in later life.
     
  16. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
    464
    This is a common drug still and shares many qualities with antipsychotics (they share similar neurological and receptor pathways) and with some antidepressants like SSRI’s.

    The side effect is called akathisia and is from dopamine blockade and cholinergic over-activity of the basal ganglia feedback loop and causes feelings of anxiety and overwhelming feeling to move, becoming visibly restless and can progress to states of high agitation. It is very distressing for the person and doctors/psychiatrists are taught to look out for it and give anticholinergic medication/benzodiazepines.

    Some people are more sensitive to these meds than others and some develop permanent movement disorders from metoclopramide and antipsychotics from regular (and very rarely one off usage) called Tardive Dyskinesia that can look like Parkinson’s disease but is not a neurodegenerative disease but still causes significant disability.
     
    Lou B Lou, Hutan, Arnie Pye and 3 others like this.
  17. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,921
    Location:
    Aotearoa New Zealand
    Ali, Dolphin and Trish like this.
  18. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

    Messages:
    585
    Location:
    Adelaide, Australia
    I know I'm very late to the party, I thought I'd add this to the thread for future reference.

    The NICE evidence review (p.97) notes there's no good quality evidence that antidepressants are beneficial for ME/CFS:

     
  19. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,277
    Location:
    UK West Midlands
    Good spot @Art Vandelay i know a lot of people get benefits for depression from SSRIs. but I seriously question whether there are benefits from tricyclics (other than being sedative (ugh) ) as a response to ME in general practice
     
    Art Vandelay and Hutan like this.
  20. Trish

    Trish Moderator Staff Member

    Messages:
    52,310
    Location:
    UK
    Some find tricyclic in low doses helpful for sleep and pain, but that seems to be based on anecdotal evidence. I'd like to see a clinical trial of several different sleep medications and placebo for sleep problems in ME.
     
    JemPD, Missense, Cheshire and 3 others like this.

Share This Page