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Seriouse sleep disurbance and ME / CFS nutrition value

Discussion in 'Lifestyle Management' started by free at last, Mar 30, 2010.

  1. free at last

    free at last Senior Member

    Hi everyone,
    This goes out to those of you that are still in the early days ( chronic time) of the illness ME /CFS
    And whos symptoms are so distressing Physically and mentally that no treatment seems to be restoring your sleep patterns to at least 6 hours a night ( day afternoon whatever ) I thought it important i told my story as others might be in the same boat now, as i was during the middle 90s.

    The relapsing remitting nature Of my condition coupled with the fact that the relapses Started to affect my mental condition ( anxiety fear ) really started to take there toll when i realized sleep was the only freind my condition would partly respond to.

    So when it started to get increasingly difficult to get the sleep my body so desperatly needed. The anxiety response to this was profound in that the more i tried to sleep because i badly needed it, the more i worried my self into a situation where it started to happen less and less.

    This thought process is similar to the one everyone experiances from time to time, when they have got something important to do the next day, And know they need as much rest as possible for the days activeties. The more you try to shut off the mind, the more you lay there restless thinking of the coming day ahead. It seems impossible at these moments to shut the mind off to the point when sleep happens. and if thats you read on

    After this continued for weeks, i also started to look at the clock a lot when waking, to see how much sleep i had just got, often it was about 2 or 3 hours, I would then get anxiouse it wasnt enough and would try to get more, but of course by now my mind was thinking again, and i had partly woke myself up. And often that might be it untill the next night, and so the pattern continued.

    The habit of constantly checking the clock was in itself making the problem worse, But i only realized all this once i had got my sleep patterns to a stage where i was truely getting the sleep a ME sufferer so badly has to sustain. This went on for many months, at a time when the ME had turned chronic, and a viciouse cycle came about of less sleep, more illnes. More illness less sleep ect, and so on.

    If one does not break this cycle then recovery will most likely not occur.

    I was being given a sleeping pill by my GP zopiclone ( zimovane ) which helped a little but not much, with the pattern described continuing even though they made me a little drowsy.

    At some point i agreed to try amitriptylene which for those that dont know is a antidepressant
    I resisted all attempts for a long time to take antidepressants 1 because i knew it was a illness and not depression that was destroying my life, and 2 my heart was often racing, most notable ( you guessed it ) when trying to sleep. And i didnt want a drug that might make that worse, as i suspected a antidepressant would.
    Anyway they stopped the Zopiclone, so i reluctantly agreed to take the Amitriptylene.

    Now as i pointed out i know my illness was not depression because of the way it progressed into it, with constant infections and fevers of over 100 f more times than i care to remember ( i thought advice to try a antidepressant was a insult actually )

    Well what i can say. this drug for me, and my seriouse sleep disorder was like dynamite
    I couldnt belive the effect it had the very first time i took it. I slept 6 hours the first time, ( 4 hours ) then 2 more as i fell asleep again WOW

    Antidepressants take time to work on depression and anxiety, so i knew it was not the antidepressant per se that had just done this, it must have been something else, a side effect of very heavy ( like a ton of bricks ) drowsy sleep. So did it matter that it was a antidepressant
    You bet your life it didnt, i was so relieved i could have cried.

    Im actually wondering about serotonin depletion too
    You may not belive me but couldnt care less ( sorry but i dont ) i just guessed at this, and its only words i picked up about ME CFS over the years, i dont understand the science behind all this ( maybe the guys who are good at this can help me out here ) but heres what i just discovered by clicking away on the net
    Heres a qoute

    The Importance of a Good Nights Sleep

    Studies have shown that individuals who were prevented from going into deep sleep for a period of a week develop the same symptoms associated with FMS and CFS; diffuse pain, fatigue, depression, anxiety, irritability, stomach disturbances, and headaches. Sleep deprivation markedly increases inflammatory cytokines (pain causing chemicals)by a whopping 40%.

    Therefore, restoring deep restorative sleep is one of the most important steps in beating fibromyalgia, if not the most important step of all


    I suspect if i hunt around on this i will discover more

    Any way back on track, the effect of amitriptylene ( or the side effect already mentioned )
    Did not diminish, in the next 4 weeks i got more sleep than probably the last previouse 6 months

    Wow i really had got lucky, and i belive this drug may have in effect saved my life

    But, and this is the important BUT, did my illness stop ? Not on your nelly, the relapses and remissions continued (though without the fevers at this point, but all the other symptoms remaind )
    I still got so ill that i had to lay down for hours at a time.
    But as the months and years ticked by, i noticed something remarkable happening
    The relapses were becoming not as powerful. and the time spent like that not as long


    I want to also add that i was heavily into nutrition, i had a book that was like my little bible, about foods and there nutrition properties.

    I started eating as many different salad type veg as i could fit on a plate, Fresh fish, salmon, prawns Crab.
    Raw garlic chopped on the plate ( taste horrible but ) Raw garlic and onion have been shown to have anti viral propeties. I certaibly had enough viral attacks to at least keep a open mind, It couldnt hurt, so why the hell not

    I also was taking hi strength magneasium tablets, hi strength vit C, a multi vit. evening primrose oil
    Same reasoning, didnt think it could hurt as long as i didnt overdose on vitamins, Free radicals and all that.

    Im now 15 years into it, no longer take amitriptylene or vitamins. I sleep well. hardly get any relapses now (though have after strenuouse exercise on a few occassions )

    Not exactly sure whats helped, and whats not helped as much, in all this fighting for my body. But I know the amitriptylene really did save my life. Take this story or dont. But i hope those that identify with what happened to me. try what i did. what have you got to lose ?

    Really hope this helps someone, i really do. I know what its like to suffer. and maybe it will work for you too.
  2. Wonko

    Wonko Senior Member

    The other side.
    have to agree about the amitriptylene - in low doses it's wonderful stuff for occasional/moderate use

    I'd be VERY careful with SSRI's tho - I intially had great results with prozac - after 2-3 days - but had ever increasing and disturbing side effects - and the damn stuff is quite addictive - I've since determined the inital positive effect is probably due to it's antihistamine effect
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    there are a number of older tricyclic antidepressants that help with sleep. I personally had no sleep effect with amitriptyline but got great sleep with doxepine, so it can be a trial and error thing to find what works for you. Alot of people are turned off because they are antidepressants or think there doc gave them these meds because there depressed, this is not the case, maybe docs need to explain themselves better. Besides depression and sleep, antidepressant meds also can help with pain and energy.

    good post free at last.

  4. Jenny

    Jenny Senior Member

    Thanks for the encouraging post Neil. Amitrip helped me too with sleep - just 10 mg a night. I'd tried all kinds of other things, and this was the only thing that worked.

    I've stopped it now as I'm on LDN and that seems to help as much if not better at the moment with sleep.

    You say you hardly have any remissions now - do you mean relapses?

  5. free at last

    free at last Senior Member

    Hi again, Yes i think anyone that might fall into the trap that i did, should benefit a lot from this drug, i personally found it amazing. But of course there may be reasons why one drug may not work the same for everyone, but in this instance as has been suggested look for alternatives, as this side to the illness, if experianced in a similair way to me, really is so very important, more important than one might think when its actually happening to them, as was the case for me. I suspect the serotonin issue might be more important than i realized, at some point i might look further into this, as i find it a very interesting issue surrounding this illness, sleep disruption, and amitriptylenes amazing effect on it.

    Apologies yes i was tired when i wrote this,i meant relapses, i will go through the post and correct that, thanks for pointing it out
    Heapsreal im a little surprised that it didnt work for you, but one thing i noticed about the sleep effect was that it has to be taken just prior to falling asleep ( not hours before ) I think the natural sleep chemical released into our bodys as we go into deep sleep, somehow mixes with the amitriptlene chemicals to produce a sort of super chemical effect, im not sure exactly what this is, or the science behind this. But i certainly could feel this effect happen each and everytime i took the drug just prior to sleep. When i took the drug early as in a couple of hours before, the effect was dimminished. So anyone trying this to aid sleep, be certain to take it as you start to feel the need to go to sleep. Sorry about my typing errors everyone grammar is not my strongest point, But hope the information helps someone
  6. bee33


    I was prescribed amitriptyline several years ago by a rheumatologist, not for depression but for fibromyalgia and CFS. I did not help me sleep but it made me feel extremely sluggish throughout the day, like I was carrying several wet blankets on my back. Since the last thing I needed was to feel even more tired, I stopped taking it soon after. Sleep is my most disabling issue, but I haven't found any help for it. Ambien works well for sleep, for me, but it makes me feel awful the next day, like I'm in a daze and it's hard to even keep track of what I'm doing and where I'm going, so I only rarely take it.

    Unfortunately what works for one person doesn't always work for another. I'm glad to hear things have improved for you though, and I appreciate your taking the time to write about what worked for you.
  7. Wonko

    Wonko Senior Member

    The other side.
    doesage was too high for you probably - it can also have a delayed effect - I have to take it in the morning to sleep that night (5-10mg)
  8. Otis

    Otis SeƱor Mumbler

    Amitriptaline helped me for a year early on in my illness but it stopped working as I got worse. I retried ita year ago and it kept me awake!

    I hope it continues to help you, these things are very individual.

  9. free at last

    free at last Senior Member

    Hi Again everyone, I must admit after what i discovered about its effects on sleep, i am very confused why the drug seems to have differeing effects, some completly at odds with how it effected me
    Bee your right it can make you sluggish if taken in the morning, afternoon, early evening ect, and as i pointed out i noticed its sleep effect really didnt work that well unless taken just prior to falling asleep and this is the key issue i found for me. Did you try taking it as you were about to sleep Bee ? because if not, i also noticed it wasnt anywhere near as effective as i found it, unless it was taken this way,

    Wonko again im very confused the way this drug seems to have a very different effect on different people, If i had taken the drug in the morning i would find it had no real effect at all by the evening, the effect i describe of the chemical mixing with the bodys own sleep chemical producing a doubling effect, wouldnt work for me with such a long delay, i found its effects started within a hour after taking it, but was much much stronger if i took it just prior to falling asleep. I have no explanation for this other than i honestly found its effect the complete opposite to what you describe. But if this worked for you then its not important, as long as it helped you im sure you agree.

    I do find the whys interesting though ?
    Otis you say it helped you for a year, thats a long time, Did you take it just prior to sleep, or during the day in intervals, im just trying to understand why its effects seem so at odds with my own experiance with it, Its too simplistic to say we are all different, I think there has to be sound reasons why these differences occur, hence my further questions here. If it turns out we can not discover why by sharing information, then so be it. Im sorry i couldnt help. If that turns out to be the case, i just wish i could offer more advice, but my knowledge is limeted to my own experiances here.

    Same goes for keeping someone awake, again i found the exact opposite effect, Not sure if you all tried taking it the way i described, if not it may be worth trying that to see if your effects match mine. Because if they do then i know it would help. But if not then i really dont have a explanation, which bothers me. because i wish i understood this more, As i dont like offering advice thats not helped. Especially when its healing effect was so proufound for me, i think maybe 60% sleep benefit 20% anxiety and fear benefit and 20% nutrition benefit as i described i am a firm believer of nutrition benefits to help the body fight viruses infection ect, of cours this wouldnt help a cancer sufferer for example, but to give the body the best quality fuel to fight infection viruses ect, most defiantely
  10. flybro

    flybro Senior Member

    amytript made me sluggish even only 5or 10 mg a night, same as bee, really heavy slow and stupid next day.

    I have found zopiclone great occasionally 2 or 3 times a week, somtimes only half a tab whixh is about 1.67mg i think.

    but one the best helps to sleep i have had is tramadol/zydol a pain killer. it even shuts my bladder up most of the night.

    amytriptalene seemd to make me jumpy as in elecrocuted jumpy, like my haert had stopped and been zapped to start again. it wud happen just as i was nodding of, awful feeling.
  11. free at last

    free at last Senior Member

    Hi Yes i know what you mean, i also have had this sudden jumping at different times in my life, most often when dropping off to sleep, i honestly cant remember if it was worse during my amitriptylene years or not it may have been ?
    I also did have the sluggish effect nextday too even when i took it mostly at night, but it was worse if i took the pills during the day which i also tried.

    But you have to imagine i was getting about 4 hours sleep every 48 hours, i was absolutely desperate to get more sleep so when this sluggish effect hit me like a ton of bricks taking it just prior to falling asleep, so i actually found it difficult to wake up ( something i hadnt had the luxary of for quite a long time ) then the draw back of the sluggish side effect nextday ( not as pronounced if i only took it at night and would clear by late afternoon ) this was a drawback for me that was worth it.

    I was in deep deep trouble, to say for me that this was the less of two evils is a huge understatement, the drug probably saved my life, So you can see why im discussing this here. Im still trying to clarify if bee only took it at night just prior to sleep. Not sure if thats the case here yet, But possibly so ?

    Zopiclone did help me a little, it had a similar drowsy effect as amitriptylene
    But did not really sort out the seriouse sleep disorder i had. That sluggish effect being described here was the one thing that i found prevented me from waking up, So im pleased it had that effect for me, because if it did not, im not sure how many months i could have continued with 4 hours sleep roughly every 2 days, it was like a living hell, im sorry you found no benefit for the drug. im still hopefull that some might respond the way i did though, im sure you agree its worth that pursuit posting this here Neil
  12. Wonko

    Wonko Senior Member

    The other side.
    yep - we are all different - the weirdest one I've come across is caffeine - half a cup of coffee can send me straight to sleep if i drink it when I'm severely depleted - I assume the stimulant effect causes too high a drain in those circumstances and somethign has to go - mainly conciousness - but I dont know - it's just a theory

    btw - unless your totally bonkers dont drink coffee as an aide to sleeping - I'm just odd

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