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Slow decline while trialing Amitriyline?

Discussion in 'General Treatment' started by taniaaust1, Apr 15, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    Im wanting to hear others experiences of this drug. Im starting to suspect that Ive been having a very slow decline since Ive been taking the Amitripyline?

    Im not sure but its looking that way .... and I noticed this also before the OD.

    Usually after Ive had someone to my house I will be recovering from it the next day but okay by that next night... but I ended up sleeping 12 hrs two nights straight after having having the home help person here.

    Im noticing Im being impacted for longer time periods after any exertion. The past two weeks.. at times Im finding I can only be awake for 7-8 hrs in day.

    Im concerned and wondering if the amitripyline is the cause? (I though havent taken it last two nights due to the hypersomnia so it should of been out of my body.. so wondering if it has given me like a decline in my whole ME state).

    Im kind of worried due to how bad a decline even a slow one of my base line could make me, due to how severe Ive been in the past.

    (I havent stopped my trial of it as thou I know it dont do anything for me at 10-30mg dose nor at a very high dose... when ive taken a 50mg dose.. im a bit unsure if its doing something or not).

    My other question is.. how fast after one takes it for sleep should it take to notice the affects of it? 1.5 hrs??
     
  2. ukxmrv

    ukxmrv Senior Member

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    I was much worse in my health on Amitrip even at small doses and past the period that the intital side effects should have worn off. My GP encouraged me to continue even with these side effects but the promised resolution of them never occured. My GP encouraged me to try the drug as he claimed it would help with sleep and pain relief. It didn't for me at all. We are all different so reactions will vary.

    Over the months of amitrip I became more and more groggy, disorientated and confused. My BP which was low became worse. It didn't help with my altered sleep pattern at all. The increased stomach problems from it (the slow stomach emptying and slow transit) and the weight gain never went.

    In my case it didn't help with sleep so sorry I cannot comment on that.

    I wonder if your blood pressure is falling and that could be causing the problems you are facing?
     
    justy likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Im also wondering if its affecting my memory more too (but that may of been cause I stopped the molybdenum which was helping it since Ive been on the Amitrip). I seem to be messing more things up lately since Ive been on it. (I havent been on B12 injections for a long while.. maybe Im just needing that again?).
    Something is going wrong right now in that area but may not be the Amitrip.

    My bowel issues have been extremely bad while on it (more like paralysed lower bowel incidents) . Ive researched it more yesterday and it seems as if it can affect someone in this way.

    Its really hard for me to say what it is doing to me as usually my drug side affects are heaps obvious and not like a very very slow decline in my symptoms, at a rate in which it is hardly obvious but over 2-3weeks seems to have happened, when comparing before and after.

    The doctor I have now is good and tells me to stop if I notice something affecting me negatively

    Ive no idea what it is doing to my BP as I take it at night when I hop into bed. My BP is so screwed up anyway.. it would be hard to notice something screwing it up more.
     
  4. adreno

    adreno 3% neanderthal

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    Amitriptyline is a potent anticholinergic, which usually explains its negative side effects. Why are you taking it?
     
  5. Googsta

    Googsta Doing Well

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    Amitriptylene is an SNRI, some M.E patients do not cope well with these drugs.

    My Neurologist prescribed this drug for me for nerve pain, he also claimed it may help OI. I always do a thorough search on all my drugs before I have the prescription filled these days. The information I found was contrary, it said it may worsen OI. I had a search but I can't find the source, sorry.

    I decided to give it a miss.
     
  6. adreno

    adreno 3% neanderthal

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    Technically, amitriptyline is a tricyclic antidepressant (TCA), not an SNRI.
     
  7. xrayspex

    xrayspex Senior Member

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    the tricyclics can bother some people's hearts, something to do with electrical. I tried them like 20 years ago, finally settled on doxepin after trying noritriptylene, ami, imipramine (gross) but got paradoxical effect, kept me more awake and made heart race at times. sort of helped with mcs and pain a tad but looked and felt better off of it, was a year or so ordeal.
     
  8. Living Dead

    Living Dead

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    Based on my understanding of ME, it is very clear to me that * all stimulating medications are strongly contraindicated *. Any prescription of such medications for ME patients without a very clear warning is bad. Some are known for sure to cause relapses. Such medications include:

    All TCAs (including amitryptiline)
    All SSRIs
    All NRIs (Reboxetine, Strattera)
    Wellbutrin
    Tramadol/Ultram
    All MAOIs
    Everything containing caffeine or theobromine (including coffee, decaf coffee (!!), dark chocolate, tea, green tea, mate, guarana)
    Vitamin B6 (unless deficient)
    L-Phenylalanine

    Amitryptiline is unsuitable as a sleep aid due to its adrenergic effects. I know many people claim to do well on it, but I also know that these people rarely tried proper alternatives.

    I have personal experience with Amitryptiline.
     
    justy likes this.
  9. Googsta

    Googsta Doing Well

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    Thanks Adreno, my apologies ;)
     
  10. snowathlete

    snowathlete

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    Living dead, I have to disagree, whereas it isn't for everyone, for some, like me, it has been fantastic. I have gone from being unable to sleep ever to sleeping close to normal on A. After 25 years of not sleeping and trying several drugs and dozens of other alternative treatments, for me it has improved my quality of life significantly.
    It raises my heart rate a little and I can feel that after 5 minutes of taking it - 20mg- I get sleepy another 5 minutes after that.

    Side effects were dreadful the first two weeks as my sleep doctor told me they would be, then they vanished. A lot of people don't give it long enough because of the initial side effects. Im not saying everyone, but some don't. Some like me will benefit a lot so it's well worth a try, some won't get on with it for whatever reason. But it's an Option and it would be a shame if people read some of these posts and were put of at least giving it a go.

    Regarding the core question, I don't thnk I have experienced a worsening of ME due to taking it, though it's hard to know for sure, I have had both periods of ME improvement and setbacks while on it. Whati can be certain of is that overall I have benefitted from taking it in terms of sleep.
     
  11. hixxy

    hixxy Woof woof

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    Amitriptyline is one of the worst things I've tried. Makes all my neurological problems worse. When I first tried in 2 years ago, I developed dilated pupils and they never really went away! Also gave me horrendous restless leg syndrome and horrible vivid dreams.
     
  12. Living Dead

    Living Dead

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    It's good to hear that you benefit from it. Some do, that's why I didn't recommend against trying, rather I meant doctors should give a clear warning to patients that they could worsen, as some do too.
     
  13. Snow Leopard

    Snow Leopard Senior Member

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    I don't like this drug, I once took 50mg and couldn't stand up in the morning, due to orthostatic intolerance.

    I sleep by maintaining regular sleeping/waking times and 0.75 mg of melatonin when I push the boundaries a bit and need to reset my sleeping times.
     
  14. taniaaust1

    taniaaust1 Senior Member

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    I was taking it just before bed in doses of up to 50mg to supposely help me to sleep.
    ...............................................

    "Anticholinergics are a class of medications that inhibit parasympathetic nerve impulses by selectively blocking the binding of the neurotransmitter acetylcholine to its receptor in nerve cells. The nerve fibers of the parasympathetic system are responsible for the involuntary movements of smooth muscles present in the gastrointestinal tract, urinary tract, lungs, etc" http://en.wikipedia.org/wiki/Anticholinergic

    I guess that explains my even worst bowel issues of late. I previously had IBS of the predominant constipation variety but have been recently suffering from like bowel paralyses of lower bowl to the point where I cant go naturally at all. :( .

    Im going to go and see a GP about it next week IF I can get there, due to the extreme length Im having to go to be able to clear out my lower bowel. (yesterday I must of scratched or tore the inside of my vagina as im now bleeding there too and it isnt my period, as I have been having to manipulate internally hard throu my vaginal walls to try to press out what is inside my bowel as I cant just go. Its like I have no peristalisis in my lower bowel at all.
    (If I was a guy and couldnt access my lower bowel like that I guess I would of ended up in hospital by now due to it).

    So this med seems to have even more screwed up my already very screwed up system :( (to the point in which my fibre supplements which usually work for me wont even work)
    ............

    I havent taken the drug again since I realised it is probably worsening my ME and the past two days ME wise.. have been much better.

    (I did thou go straight into starting up taking Fludrocortisone as soon as I stopped with the Amitriptyline. (as that was the next thing I planned to trial..but for POTS. As POTS also can cause insomina, I thought I may try to hit the insomnia from that angle.

    With the Fludrocortisone.. I not only within days got back to my old ME baseline but have also improved upon that baseline ..actually an approvement of my activity capability of about an extra one third of what I was before able to do... (except my bowel is still probably screwed). I really hope that several weeks of the Amitriptyline hasnt done anything permanent to it.
     
  15. taniaaust1

    taniaaust1 Senior Member

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    Ive already trialed doxepin for sleep and that didnt help me at all.
     
  16. xrayspex

    xrayspex Senior Member

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    tania, yea, doxepin was the least offensive of the tricyclics for me but it was also offensive and so went off it in the end :)
     
  17. peggy-sue

    peggy-sue

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    I was give Amitriptyline (10mgs) early on in my illness, to "help with sleep". I took it for 6 weeks, and kept notes at the time.
    Here they are:-


    Amitriptyline, 10mg.

    Side effects:

    Constipation
    Urine production haywire leading to cystitis-like symptoms
    Incoordination - seriously exacerbated
    Sweats and hot flushing - seriously exacerbated,
    Lack of appetite losing weight Ive been struggling to put/keep on.
    .Rapidly approaching size 0
    Loss of taste
    Feeling spaced-out. When combined with cheerfulness, I like it, but when .cheerfulness gone, its horrid.
    The WORST: Blurred vision and inability to accommodate is very, very seriously
    exacerbated. I find this unacceptable.


    Benefits:

    Sleep much improved mostly. Managing slots of up to 4 hours, only waking once or twice managing up to 6 hours total sometimes, which is very good. Just oblivion for a few hours in 24 is good!
    (except for last night, when I took the pill early, to try to minimise side effects today dont think Ill do that again. Felt rotten in evening, very poor sleep, sweats, unable to sleep again soon after waking, feel really lousy today, like the alcohol withdrawal tremors, spaced, incoordinated and ready to cry any minute)

    In general, (when I wrote this all out yesterday, but today am loosing faith!)

    Feeling a lot better for the improved sleep, feel as if Im finally starting to come out of the post-recent-flu payback, and hope, hope, hope I might be getting over the payback from last autumn.

    Have been feeling cheerful, but also very tearful.

    Ive noticed Im using big words again which surprises me and makes me realise I havent been using big words for a long time. Sadly, this is not accompanied by clearer thinking or ability to use logic.


    Its actually been quite difficult to work all this out, because a lot of these symptoms are similar to the symptoms of whatever Ive got. (WIG) It was only two days ago I decided they are so pronounced that I feel its the drug, not WIG."

    After the 6 weeks, I decided that my cheerfulness could not be relied upon full time to mitigate the side effects, so I stopped.

    For weeks I suffered really badly from withdrawal side-effects POTS and OI - including several fainting episodes - the kind where you have to sleep for 4-5 hours afterwards.

    I did find that using laxative chocolate (senna) helped with the initial constipative effects.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    thanks for sharing peggy-sue. With all the issue so many of us have had with it (I also had someone pmed me to say it PERMANENTLY damaged her bladders ability to function), it surprises me that my CFS specialist uses it on many of his patients.

    ....

    My bowel isnt still back to how it usually is... but has been since I stopped this drug SLOWLY heading back to how it was, thou Im still having some issue.

    I tried to get in to the GP this week for the bowel issues but without luck .. as the only day they had appointment I could get too, the person who could of taken me wasnt free (and next week, I couldnt get in with the doctor there ..so Im now going to probably wait until my boyfriend gets back and can take me to my specialist).
     

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