Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Aug 25, 2006.

  1. Bunchy

    Bunchy New Member

    I've talked about this before but I am at the end of my tether with my sleep issues.

    I am now taking Zopiclone (max dose) every night and mixing it with 2 Soma or 2 10mg Ambien or a large amount of Klonopin (about 3-4mg)on different nights. Sometimes if I have spare, I just take extra zopiclone.

    I was able to cut my dose on benzos in half during our house move as I stayed with my parents during that time and they live by the sea and I sleep much better by the sea.

    Currenty living inland near London again and I am struggling to sleep again - nothing is working and the doc is starting to think I am taking too much (he's right!)

    If I don't sleep well for more than two nights my whole body completely collapses in on itself and further sleep deprivation has, in the past, set off new severe symptom syndromes from which I never recovered.

    I am terrified the doc will want me to try a taper plan again (tried for two days to stabilise and slept about 2 hours total!)

    But what can I do? I NEED to sleep to preserve what lttle health I have left but I am using more than they will RX. What happens when I run out of the extras?

    I'm scared and feel very trapped by this problem - have tried all the natural stuff including sleep hygiene, Melatonin, Valerian - they don't touch me.

    I even tried Trazadone but it stopped working after a few days.

    I'm crying as I write this as I don't know what to do.

    I see most of you are on something but nothing like the amount I take and for me tolerance builds up in a few days.

    Please try to help with ideas if you can.

    Love Bunchy xxx

    PS Have an appt with doc in 10 days and wonder if I should ask for something stronger but then I may buid tolerance to that too....
  2. jeduanboneis

    jeduanboneis New Member

    I was a mess for years and years until 3 mos ago when I started Ambien CR. It has been a Godsend. But I have to take a Flexeril close before I take the Ambien or else it doesn't last longer than 5 hrs.

    I think Dr. Tietelbaum recommends that you take the Rx togther with the herbal formulas as well. And you have to do whatever works for you. We are facing a major sleep disorder.

    I used to take 2 Sominex at night for a long, long time. Years. And then I started taking the 2 Sominex in the afternoon to nap when I was feeling really sick. The Dr. said they are OK as they are just amino acids.

    I guess we have to be careful what we mix with what but you gotta do what you gotta do!!!

  3. Bunchy

    Bunchy New Member

    Does the flexeril keep working or do you get tolerant to the sleepy effect of it as I have with soma?

    Also a lot of people suggest Zanaflex which might help my muscle spasms too but again I am worried it will stop making me sleepy after a while.

    Thanks for responding :)

    Love Bunchy
  4. jeduanboneis

    jeduanboneis New Member

    The Flexeril only affects me after I take the 2nd one of the day. The first one doesn't make me sleepy at all. My Dr. says she will sleep for a day and a half on 1 Flexeril. And then there are us. For me to find something to put me to sleep is a big deal.

    I am out of Ambien by mistake and will not have any until Tues. I am going to try the 2nd Flexeril of the day and take 4 Sominex. I pray that will work. I am a bit worried.

    I think, for me, I have to switch around with adding to the Ambien. I can tell that the Flexeril is not as affective as it used to be. I can take Melatonin (nothing happens), Valerian (nothing happens), GABA (nothing happens), KAVA KAVA (nothing happens) 5HTP-Tryptophan (nothing happens) so I just rely on what I have on hand. Sometimes I have to add a Darvocet of I used to take a Xanax. My Dr. would probably go ballistic, but I have to do what I can do or else I just lay there. Whatever I take though, I am still in some pain no matter what.

    Hope this helps. The pharmacist suggested that since I don't have the Ambien then the closest thing is Unisom.

    I think taking the over the counter meds with the Rx is the safest way to go.

    When I take the Flexeril too late before I take the Ambien,I do have a bit of a thick head when I wake up. But at least I can sleep.

    Hope this helps and you do find something.

    I also have to read for a good while before I can go to sleep, no matter what time fo day it is.

  5. littleleafhopper

    littleleafhopper New Member

    Dear Bunchy,

    This sounds just miserable. Have you considered having an overnight Sleep Study done? You might discuss this with your GP at your next visit and ask him for a referral to one.

    That way if there was something going on with your sleep patterns, or with obstructive breathing like sleep apnea, they could catch it and hopefully get you some relief.

    There's some good information on

    Goodluck, Lil
  6. JenniferAnn539

    JenniferAnn539 New Member


    Have you tried rotating or cycling your sleep medication?

    This is the only way I am able to get some sleep. If you want additional information to present to your doctor, pull up Dr. Paul Cheney's protocol on line. He discusses how it is therapeutic to take a sleep med for a certain amount of days and then switch to another one and then in a few more days switch to another one.

    A doctor at a sleep clinic suggested this and we were able to find the right sleep medication to help me sleep. When I saw Dr. Cheney as my CFIDS doctor he confirmed that it was the right decision because, for some of us our brain gets use to a sleep drug and it becomes ineffective. By cycling and only taking one drug for a few days and then switching to another it allows the first drug to leave our system and also prevents us from becoming addicted to the sleep medication.

    I would suggest doing research on sleep meds available and see if your doctor would be willing help you pick more then one sleep med and allow you to try cycling it. Also, I know that trazadone has been successful when used in low doses nightly and then a sleep med in addition, again, you can ask your doctor.

    We are all different, but the answer for me (and I still have sleep difficulties here and there), was getting the medications that agreed with me and rotating them.

    Best of luck.

  7. dolfenn43

    dolfenn43 New Member

    this really causes me to have anexity. Just thinking about not being able to sleep. Cuz of knowing the pain Im ging to fel all night and wake up with pain.
    I reciently took a times realsease im xanax. I took it at about 4 pm It slighly made me feel relaxed. But when it came time for bed I was able to relax a sleep without pain.My sleep level wasnt perfect. but it felt ok. I was in and out of sleep and comfortable. I was amased.

    I usally take klopopin. But i had none that night just the xanax. I am going to talk with the doc next visit and see what he has to say. I dont want to take something more addictive. But if it gives me a better quality of sleep then I will let the doc decied. Im on pain meds also. That by the way dont cause drousiness at all.

    Maybe this could help you as well or maybe a stronger timed resalse xanax

  8. Abbycat

    Abbycat New Member

    Please go have a sleep study done. Your doctor will have a much better understanding of what you are going through when he sees your brain wave patterns. My understanding is that we don't get into the level of sleep where our bodies repair themselves, so we are continually wearing ourselves out.

    I've tried a number of different sleep meds and combos. Ambien, Zanaflex and hydrocodone depending on what I need. Lyrica seems to work well for nerve and muscle pain.

    Even when I take everything, a rare event, I still don't sleep through the night. I sleep an hour or two and then wake up. The best I can hope for is that I will fall back to sleep quickly or at least be able to feel comfortable laying there and be able to rest. I wake up and have to get up about 3-5 times a night and I read in the bathroom and get back in bed. Towards the morning is where I sleep hard but short and have a lot of dreams. I really don't remember ever sleeping through a whole night except as a child. Maybe this is why I have fibro. I try not to concentrate on how many hours I sleep, but I do go to bed early and think of resting the same as sleeping.

    I think you are overmedicating in the quest to sleep for eight hours a night straight through. I would ask yourself why you are not sleeping. Are you in pain? If you are then you need pain meds not sleep meds. Zanaflex and Lyrica help some for me. Where is your pain? Are you just laying there and not sleeping? Maybe you need an anti-anxiety or anti- depressant to get your mind to stop worrying. Do you have a sleep disorder like apnea or restless leg syndrome? You would need a sleep study to identify those.

    There are many things that could cause your sleep problems. Please request a sleep study and hopefully you will get started on finding out why. I understand your desperation because you feel horrible, but you can get help. Your doctors are not necessarily going to help you so you have to try and help yourself. It's like asking a cancer patient to cure himself, but I think to get to the bottom of this you're going to have to fight to get some answers. Getting stronger and stronger drugs for sleep is not addressing the problem of why you aren't sleeping.

    I'm sorry if I sound preachy, but I've been through 4 years of Rheumatoid arthritis and now fibro and I'm really tired of doctors not knowing or caring about what happens to us. I think we have to encourage each other to demand better treatments. I'm too tired too, but maybe we can encourage each other and get some real help.

  9. PVLady

    PVLady New Member

    I am having pretty good success with Restoril 15 mg and one 25 mg Benadryl (which is same as OTC sleep aid).

    Sometimes I rotate to Ambien 10 mg and the OTC sleep aid.

    Restoril is in same family as Klonopin. According to drug info, it is supposed to have less problems with tolerance.

  10. rachel432

    rachel432 New Member

    the drug that works for me for sleep is seroquel. you could ask your dr for that. but i'm up to 600mg of that each night. also you could add benadryl into the mix. you shouldn't need a script for that and it helps.
  11. Bunchy

    Bunchy New Member

    Which sleep meds do you cycle and how much do you take of each?

    Also can you tell me where to find the relevant Cheney article that talks about cycling sleep meds so I can print it and show it to my Doc?

    Thanks so much

    Bunchy xxx
  12. Bunchy

    Bunchy New Member

    going out now - will respond more later.

    Jenniferann, please let me know which sleep meds you cycle and how much you take?

    Also anyone else who does this please???

    Can't find anything by Cheney about cycling sleep meds - where can I find this article - anyone?

    Love Bunchy xxx
  13. NyroFan

    NyroFan New Member


    Maybe mention Dalmane to your doc. Mine refuses to give it to me, but many years ago I was on it for about a month and know how well I slept.

    It can not hurt to ask. Just a suggestion.

  14. Bunchy

    Bunchy New Member

    Thaank you all so much for responding.

    I'd like to know what doses everyone is on of different meds and still would like to know where the article is that Cheney wrote about cycling sleep meds although I already tried to do this and it worked qite well until the last few weeks when I moved house. I think the change of environment hasn't helped but even so, I am still on higher doses it seems tyhan anyone else here. I feel likea drug addict! Can't write more as wrists seizing up.

    Love to all,

    Bunchy xx
  15. JenniferAnn539

    JenniferAnn539 New Member


    I looked on line for the Cheney information, and it appears that the site that had the information is no longer up and running.

    I may be able to give you the link to contact someone who probably has this info. I will also provide you with my med names tomorrow after I locate the contact info.

  16. dragon06

    dragon06 New Member

    I have never found a sleep med that has helped me FALL asleep. Ever since starting the Lyrica I get a much deeper and restorative sleep than I was before but I still have issues with getting to sleep.

    Once I get to sleep though I am good to stay asleep for quite a few hours.
  17. pmesser

    pmesser New Member

    After having read all of your streaming comments and same on another series (Sleep) on this board in past two days, last night I had courage to take heavier than usual amounts of Gabitril 8mg, AmbienCR 12.5mg and 30-40 ml of liquid extract Valerian. Bingo, I went into deepest sleep in weeks for six hours, and in just this one instance, I feel enough better to know how critical is resolving this sleep disorder. Next will be experimenting with some benedryl.

    I am a guy in 60's with 17 years with CFS/Fibro. I was successfully on .150 Klonopin for 8 years but as I got habituated toward the end, and slept less well, I detoxed off Klonopin and searching for alternative solutions. It is clearly the drug of choice for many PWC's, so I may choose to go back on it, if all else fails.

    CHeers, Paul

  18. razorqueen

    razorqueen Member

    are you taking any meds that could be contributing to your not sleeping? I know that is what Effexor did to me. Now that I am off of it, I am sleeping better, but still with a sleep med. When the dr finally gave me Zopiclone after I had weaned down on my clonazapam, THAT didn't even help much.

    As I started weaning off of, and am now completely off of the Effexor, it is helping me much better. So check into the fact that some of your meds could be the culprit. If you don't need it, or it isn't helping,, GET OFF!!

  19. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I heartily second Jennifer's tips to stagger your meds. I have a tolerance problem too and its the only way around it.

    I rarely take sleep meds, a bit of clonazepam when I do, but I have to take 2 different painkillers and swap them twice a week or they barely work and I max out my doses real quick.

    I've always had this tolerance problem, from the first time I took tylenol 3 for wisdom teeth it was happening. I guess its a glitch in our system and you have to work around it.

    Btw, I used to have a sporadic sleep disorder where I'd need more help for spells, but since I started taking adrenal glands I've been pretty consistent and careful sleep hygiene, or multimineral, or alkalizer is enough. Light therapy for SAD may have contributed too.

  20. Bunchy

    Bunchy New Member

    No I am not on any meds which could be causing the problems - I think the fact that I have been using sleep meds to the point of abuse (unintentionally of course) has caused the severe insomnia and difficulty getting sleepy now. Before sleep meds, I rarely had problems sleeping although my circadian cycle was a bit skewed so I went to bed late and got up late.

    I have cycled my meds somewhat but even this isn't working at the moment. Like last night I took Klonopin but had to add a Soma at 4am cos I just wasn't getting sleepy.

    Gabitril sounds good but I guess, like Jeanne I would just build tolerance to that too besides I live in the UK and it is only available for epilepsy here. Asked doc to try me on Zanaflex to help cycle but he said too expensive here. Will ask again at next appt as one CFS specialist I saw a few years ago recommended it.

    Jenniferann - still waiting to hear about your meds and that article.

    Thanks everyone and sleep well :)

    Love Bunchy xxx

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