15 Replies

  • Posted

    Hi I have just started to use melotonin and nytol also kalms this has improved my sleep a great deal and sleep hygiene it's a case of trying different approaches its took me nearly 2 years to get my sleep pattern back it's still not great you can ask your gp about melotonin as your probably aware what works for one person may not for another also amitriptyline may help at a low dose for sleep and pain
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  • Posted

    My husband (who's had ME/CFS for over 25 nightmarish years) is on Trazadone, and also Lorazapam.  But it's probably best not to get on Lorazapam (Ativan) unless you're having serious problems with anxiety attacks like he was.  It helped him greatly, but he has a very severe form of the illness and was bedridden for two decades.  He's improved a great deal now, and can get around some, but it's very hard on him.  He's also on Magnesium (which helps with hundreds of functions in your body, including pain, and it helps to relax the muscles.

     

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  • Posted

    I use Soma but sleeping pills are not the answer.  Nice to have on hand when you really need them, but alas, like any drug, you will become tolerant to it and it will no longer work.  I have tried all the standard sleeping pills like Ambian.  It works really well but I sleepwalk and it greatly upped that, putting me in danger (like leaving the house in the middle of the night in my gown!).  Very hung over the next day.  Husband banned this one because he gets no sleep while I'm up all night walking, eating, ordering who knows what randomly, etc.  Herbal tea, like Valerian root or chamomile, may relax you but I can't say it helped all that much.  Try acupuncture.  I've heard that is at least a good sleep inducer for a while.  Good luck.  People who go to bed at night and fall asleep are blessed indeed.  And pain is always worse after no restorative sleep.  
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  • Posted

    Hiya,

    I don't have any useful suggestions with regard to medication but I have a great sleep routine which means I'm no longer up until 4am and waking up at 6am or sleeping 12 hours. So I'll share what I do just in case there's something you might not have tried.

    I make sure I go to bed at the same time and wake up at the same time every day. I also do breathing exercises every night whether or not I am struggling to sleep - this means in the instances I am struggling to fall asleep I am at least super relaxed and I find it takes me less time to fall asleep when I am having trouble. The exercises I do are the 4-7-8 routine which is where you breathe in for 4 seconds, hold for 7 and breathe out for 8. I found this quite an unpleasant sensation at first but I've been practicing it every night for about a year now and I find I am asleep after about  4 repetitions.

     I also count my breaths up until 10, So breathing in is "1", out is "2" up until 10 and repeat, I just like that one to start off sometimes and it's especially good if you have a racing mind.

     

    I also find that getting a good baseline and routine has had a huge impact on my ability to sleep - so now I really notice when I've done "too much" because I will go to bed feeling wired and buzzing and will struggle to fall asleep although it's much better because with my exercises and good sleep routine I'm usually only awake in bed for one or 2 hours at most. On those nights I use breathing exercises and I will sometimes listen to music, there's a good track I found that was apparently designed with the help of sleep specialists called Weightless by Marconi Union - you can find it on YouTube - it helps with relaxation and means when I can't sleep I am at least really relaxed and I find I usually don't suffer as much the next day.

    I hope this helps!

    Toni x

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  • Posted

    I just use Amitriptyline 10mg. I did start to use an over the counter tablet which I have forgotten the name of. Its what is in night nurse. However I was concerned as to what effect it was having and felt better for not using them. I take my Amitriptyline round about a couple of hours before I go to bed. I find it depends how relaxed you are before you go up. I can't always get it right but if I do I have a resonable night. The thing that does disturb me is the hot flushes. Can't find any reason why it happens some times and not others. Sleep has been important to me even before this illness so it has been disturbing. Can I suggest you try and forget the time you go to bed and go when you feel things are right. Its not easy because the more its on your mind the more difficult it is. Practice makes perfect.

    Good Luck

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  • Posted

    I take a cocktail.  Zolpidem(generic ambien) ER , valerian, Calm, and progesterone.  I hope to wean off the ambien because it's so powerful and think it gives me heartburn.  Hope that helps.
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  • Posted

    I've used Trazodone every night for years. Every doctor I've spoken to says that it doesn't have the side effects of the other sleep meds (Ambien, etc) and they feel comfortable prescribing me Trazodone indefinitely. I also supplement with a small dose of Melatonin (1-1.5mg...anything more will disrupt my sleep). The combination of the Trazodone and melatonin works pretty good for me. I add in some magnesium before bed for good measure as well!

    Also, if you are taking any daytime supplements, I would encourage you to research their effects on sleep. I have found that iodine and B12 both bother my sleep. I have to take iodine in the morning or it bothers my sleep. For me, taking extra B12 at any time will keep me awake at night. 

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  • Posted

    I use Valerian herb pills, or lavender drops, sometimes a mixture of the two. As with other things, you can get used to them, or addicted in some way, so only use as a cure, not on a permanent basis.

    To the other good advice I will add do not use a daylight lamp in the hour before going to sleep, or watch tv or use a screen.

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  • Posted

    Hi Bunnyhugger;    after many years of waking up groggy and weary (like most others with this condition).....unrefreshed..............I researched and found that we do not go through the REM stage of sleep (for some reason we do not seem to make enough Melatonin)................hence I found an on-line Brand that works wonders for me (I tried those from pharmacy, but not any good for me)...................if you want brand, I can send via PM.....others have got their Melatonin via drinking Cherry Juice, which apparently has this component in it...(I have also read re diet, that Cherries are beneficial for many Auto-immune conditions.....just a shame that we can't buy them all year round)...................hoping that this may help.......................Bron
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  • Posted

    Hi Bunnyhugger;    after many years of waking up groggy and weary (like most others with this condition).....unrefreshed..............I researched and found that we do not go through the REM stage of sleep (for some reason we do not seem to make enough Melatonin)................hence I found an on-line Brand that works wonders for me (I tried those from pharmacy, but not any good for me)...................if you want brand, I can send via PM.....others have got their Melatonin via drinking Cherry Juice, which apparently has this component in it...(I have also read re diet, that Cherries are beneficial for many Auto-immune conditions.....just a shame that we can't buy them all year round)...................hoping that this may help.......................Bron
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    • Posted

      hi bronwyn I was just intrested to see what the melotonin is your using I use the prescription one from my gp How much do you take I am on 2 mg I have had some better nights sleep but I have seen the pattern if I am over stimulated or have done to much my body just seems wired and I struggle to sleep with the sleep aids I am using I have heard that cherries are good source of melotonin if you could send us a pm that would be great thanks 
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  • Posted

    Occasionally take herbal remedy - like Nytol but own brand. It has valerian, hops and pasison flower, I think. It helps me get off to sleep as it is relaxing, but i always wake up again, usually every couple of hours. then I have some talking books on an MP3 player, something about the quality of the voice drones me off to sleep.
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  • Posted

    I am on 10mg Amitriptyline for pain relief. This seems to make you relax, but you have got to get the timing right. I have left it too late and you can lay awake for hours. I have to get off quickly.
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