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Sleep meds, wouldnt it be good??

Discussion in 'General Treatment' started by heapsreal, Apr 27, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im throwing this question out there hopefully someone has an answer.

    Now wouldnt it be good if the was a drug or procedure that could clean up your benzo receptors and get rid of medication intolerance? And the old sleep meds would work great again.

    I have tried everything benzo, nonbenzo, antihistamine, sedating antidepressants, anticonvulsants etc and i mix and match, take breaks from them but try to keep the doses the same. This works for awhile, years actually but its getting less effective, hopefully they bring something new out soon. The only other way i know to reduce tolerance is to stop the meds for an extended period of time, but i would have to do this over an extended period of time on aslow taper. And i think it would be hell, it feels like hell when i have had 2/5 of bugger all sleep, plus hard to do this around work and personally i still think the underlying sleep problems will be there as most who choice not to medicate have strange and crappy sleep cycles. i giggle to myself as i type this at 330am, lol.

    cheers!!!
  2. m1she11e

    m1she11e Senior Member

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    Hey Heaps,

    I do think it WOULD BE GOOD. With that said, I find this illness so confusing. (Big news there, huh?) I NEVER had sleep troubles in the first 25 years I was sick. I see on these forums though that almost everyone does. My sleep troubles only developed when I went through an extremely stressful time. My mind wouldnt shut off and I had every reason to be thinking about everything day and NIGHT. My first experience was with Xanax at night and I stopped after 6 months (didnt need it) with no problems. I went to get more Xanax about a year later during another stressful event and the doc put me on Klonopin instead. I wish they had not because I became addicted.

    I took a 1/2 of the lowest dose of Klonopin for about 2 years. I then got really sick (mystery as to why still) and was housebound, couldnt work and barely could even walk. That is when Klonopin stopped working. I kept increasing the dose but it just did nothing. I was so depressed over being so sick that I couldnt sleep at all, I would jolt awake at 2 am when I was sleeping and then fall back asleep at around 4. I couldnt take naps anymore either even though I was exhausted beyond description. Finally, after trying some sleep meds and sedating antidepressants to no avail, I started Flexeril and it has worked SO GOOD!!

    Im sure you have tried muscle relaxers and this is no news to you. I find it strange though that sleep was never a real issue for me until I got REALLY sick. This is when the Benzo stopped working. Thank God Flexeril worked because that not sleeping thing was awful!! I thought I was going to go insane.

    Not sure this even helped or went along with your thread. Ive just been thinking a lot lately about sleep, and why so many cant get a restful night and why I could for so long???? I also put on the "just started Famvir" thread that I ocassionally take a second Flexeril around 3 or 4 am and I feel SO rested the next day. It pulls me out of a downward cycle. That sleep thing is HUGE.

    What about Xyrem?? I have wondered about that since really knocking myself out helps so much. Its hard to get though.

    CHEERS!!!
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I saw your comment about flexeril, interesting, i do use other muscle relaxers but nothing is really helping lately. XYREM would be nice but they wont have it in australia. I have been using zopiclone for quite awhile 2 tabs most nights or another benzo, but i might just stop the benzos for awhile and persist with antihistamines and some natural stuff. Even my knock out pill seroquel which i use once a week or a fortnight is doing nothing, surely this cant be tolerence. The only other thing i can think of is that im on a low dose dhea 10mg, so i might stop it first and see what happens. Or just viral reactivation???????????? but my sleep seems to go through these periods where nothing helps and then i go back to being able to sleep, just very cyclic, just drives me up the wall as i wonder around the head like a bear with a sore head, going from computer (which i cant concentrate on from fatigue) to lying in bed resting.
  4. WillowJ

    WillowJ Senior Member

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    it really would be nice if they could fix the intolerance thing!

    flexeril is good for me, too. helps me go back to sleep faster when I wake up, and not wake as much.

    treating pain really helps, too. I'm using meloxicam (just a NSAID). have not tried COXII inhibitors, but it seems that would be worth a debate.

    generic form of zyrtec also helps with sleep (we usually have dyspnea, even if we don't have full apnea, and this was recommended by my pulmonologist, who also wants me to use a neti pot and a nasal spray for post-nasal drip)

    the other things I use are on your already-tried list (anticonvulsants)
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    here a list of stuff i have tried:

    Zolpidem- worked well for first 2years of cfs then stopped working , used it 2-3days a week.
    zopiclone- been my most consistant sleep med but its losing its effect, use to use it every second night but now 1-2 times a week because its not working that well.

    Tamazepam- never eally did much, relaxed abit.
    mogadon- first few times or if i havent used it in awhile i get good sleep but tolerance occurrs quickly.
    Valium- has been quite good to initiate sleep and still use it occassionally, its up there with zopiclone, not quite.
    rohypnol- probably the strongest of the traditional benzos but still only gives 4 hours sleep so need to use it with something that helps prolong sleep, try not to use to often just because it has a history of bad addiction.
    Klonopin- used this a few times from a friend, helps to chill and works well in a combo for sleep, but even small amount i have used i can feel tolereance to them already

    So thats the benzo's and z-drugs and find them mainly good to initiate sleep, on their own would get 4-5 hours sleep, so normally use with lyrica or antihistamine. But i have swapped and changed many times to try an avoid tolerance, i have kept my doses low but may have come to the point where tolereance is inevitable and need to take a break from them for awhile.

    Sedating antidepressants i have used:
    doxepin- was initially great, fantastic for sleep but if used nightly it really put the weight on and of cause tolerance is an issue, very rarely works now.
    amitriptyline- i was dissappointed as so many people say how sedating it is, go nothing from it other then some relief from aches and pains and low doses did improve mood.
    prothiaden- did nothing for sleep, just made me fall in love with vegemite on toast and put weight on.
    mirtazapine- wow when i first took this it knocked me out and woke up groggy as and couldnt shake it, eventually it passes and u wake up feeling better but again tolerance is an issue.
    surmontil- this was a dissappointment too, as i had read that it was for hard core insomniacs, did nothing.
    trazadone- hit and miss, really only good to help sustain sleep, doesnt help me fall asleep.
    seroquel- wow, its a bomb, 13hrs sleep the first few times i uesed it, woke feeling alittle groggy but could shake it off, found it sort of reset my brain after being tired but wired, used nightly it doesnt work and even now tolerance is a problem only using it once a week.
    So the above are all in that antidepressant category and mainly used like a sleeping pill, not used every night like an AD, nightly use the sedative effects just wore off and mainly good for help sustain sleep not getting to sleep, seroquel being the exception it did it all.

    Anticonvulsants:
    lyrica- the first night by itself gave me great quality sleep but that was it, after that needesd to use it with other meds to get me to sleep but it does improve sleep quality and help with leg pains at night, tolerance is an issue so mix and match it with other meds.
    neurontin- not much for sleep but better for night time leg pains then lyrica.
    topamax- might help improve sleep quality but nothing great.

    antihistamines and muscle relaxers:
    baclofen- with other meds sleep quality has improved but tolerance seems to occur so use it intermittently
    zanaflex- ok, find it useful if need only a few hours sleep like when u wake at 2am and need to be awake at 6am, but nothing great.
    orphenadrine- nothing great there either
    phenergan/doxylamine/atarax/periactin/diphenhydramine- all very helpful in the early days and quite sedating but effects wear off. On someone who has never used sleep meds i would say doxylamine is just as strong as most presciption meds maybe stronger but tolerence occurss quickly. now i use them as an add on to a benzo to increase length of sleep.

    ***i dont use these meds all the time or in large doses, but rotate between a couple of them regularly ie every night as i have found even in the beginning that if i used a sleep med2-3 nights in a row it would stop working, so i try to use something different every night. Is this dangerous, i dont know, but i think its safer then just using 1 med and increasing the dosage to rediculous levels. I have tried many natural things and tolerence to them occurrs quickly too but a quick list of what i like- tryptophan, kava, damiana, withania,melatonin.

    If xyrem was legal in australia i would be on it if i could afford it, but going by past experiences i think i would end up building a tolerance to it as well. I have also done meditation tapes, relaxation type things, given up caffeine etc etc etc. Im not even sure its drug tolerance but maybe viral reactivation(or both) that could be causing these bouts of insomnia because it can last so many days and then everything starts working again.

    At the end of the day im just having a winge, and showing everyone how much crap i have tried and im sure i have missed a few things too, lol.

    Did i mention im having problems sleeping, he he he!!!
    gotta laugh or i would cry, lol.

    cheers!!!
  6. WillowJ

    WillowJ Senior Member

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    I don't know about very many of the others, but that's dangerous with topamax. Topamax lowers your seizure threshold and should never be stopped abruptly. So if this is included in your rotation, either you aren't using an effective dose, or you're putting yourself in danger of a severe seizure (even if you have never had a seizure before, they don't run in the family, etc.). Topamax has to be titrated up to an effective dose, then titrated back down when going off the medicine.
    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000998/#a697012-how

    Topamax takes 1 month to begin working and 2-3 months to reach optimum effectiveness
    http://www.topamax.com/tools-resources--faqs.html#2

    Standard dose for migraines is 100 mg, (50 mg each morning and night), seems like the one to use for sleep
    http://www.rxlist.com/topamax-drug.htm (titration schedule here; may use half increments - the tablets may be cut; reverse the schedule to discontinue use)

    I'm using generic of topamax (for migraines but they help with sleep, too) and gabapentin (neurontin) and, combined, they help. I find the additive of everything is the most help, but I'm not having sudden intolerance issues (so far).

    best,
    Willowj
  7. Questus

    Questus Senior Member

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    Sleep...Perchance to dream!

    Have used Klonopin since the 80's and still depend on it.

    Use Melatonin which really helps. At one point felt it was no longer working as well so switched to a time-released Melatonin, and it makes a big difference.

    Also, this year have had to use Seraquel for sleep. It's FDA approved for insomnia. Really didn't want to have to add yet another pharmaceutical. Started Seraquel at a low dose (25mg.), and very, very slowly...Took months to work my way up to 75mg. which does the trick! As Heapsreal says..It's a bomb.

    When I researched it, it's all over the Insomnia message boards, and is considered 'the heavy hitter' for insomnia.

    The downside is it's very expensive! There's no generic. It's been worth it though.

    Flexeril does not help me with sleep issues, but Zanaflex did. Again, my experience with Zanaflex is that it's only good for a few good hours, but for an afternoon nap is was great...Until it stopped working due to tolerance..(took about a year)...But it was very helpful until it stopped working.

    If you're truly sleepless, and benzos are not working, and you've tried simple antihistimines and muscle relaxers...Seroquel is the real deal for deep sleep.

    Good night All...
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi willow,
    i know where your getting at but with my docs ok i rotate it with other anticonvulsants like lyrica and neurontin but not as often as other meds, dosage of topamax is only 50mg. Sedation from these is suppose to occur from the first dosage so using for sleep isnt really necessary to be on them for weeks to see a difference, different if for migraines. The dosages are lower enough that there is nothing to really taper down too. Anticonvulsants i mainly use for leg pains at night, maybe RLS, byproduct of better sleep from them is a bonus.

    cheers!!!
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Glad the seroquel is helping you. It usually does for me too, but not of late, but i also dont use it every night either. There is abit of a stigma about seroquel but dosages for insomnia are alot lower then for its original indications. I have read doses above 200mg that theres no more sedation, supposedly. 100mg is my normal dose but can get cheap generics of seroquel from 4rx.com if money is tight. luckily my doc has given me a crap load of samples that should last me awhile.

    cheers!!!
  10. Questus

    Questus Senior Member

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  11. WillowJ

    WillowJ Senior Member

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    okay :)

    cheers
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    my brother inlaw use these guys for his seroquel and doesnt find it any different to main brand seroquel other then price, knocks him out to sleep.
    http://www.4rx.com/online-pharmacy/categories/mental-health/generic-quetiapine-fumarate.html

    different laws in different countries though can get around the whole patent/generic thing
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks for the concern willow, but u still need to find me an insomnia cure???lol

    cheers!!!
  14. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I heapsreal. I've been looking for sleep stuff and came across this post from you Re: benzos.

    In 2009 it took me 4 months to taper off 1 mg of klonopin using the titration method. It took another year for me to be able to sleep more than 2 hours a night but i still needed my beloved trazodone which I have to give up. Thats another story but 2 days on elavil is enough for me.

    Anyway, in Sept 2010 I had a colonscopy and I was worried about my gaba receptors. I was right to be worried because evn a year off the benzos the stuff I got, shoot a benzo, no sleep so I cannot remember, anyway, it lit up my gaba receptors I was craving benzos really bad. Oh Versed.

    A few months after that I was cleaning out a drawer and found what I thought was klonopin and got the shakes. It was clonidin but still. I still crave benzos and I've been off for 2 years.

    So not sure how this would work for you.

    As an aside, people were talking about trying to get off Z-drugs. There is a lot of info on www.benzowithdrawal.org.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi minkey,
    I dont crave benzo's, i crave sleep that benzos give. If the benzo's stop working for me i dont have a problem with stopping them because its the sleep im after and if there not doing there job i cant see the point in taking them, i dont get or feel any withdrawal type symptoms other them maybe rebound insomnia but who is to say i would have had insomnia anyway, lol. Im sort of not sure where i stand at the moment in reguards to benzo's worsening sleep or cfs is causing the sleep problems. I know the sleep problems started after cfs and thats when i started sleep meds.

    At the moment i have stopped benzo's because i think i have built a tolerance to them and there just not working for me, but im looking into other non benzo combos etc with herbal stuff to try and get some sleep, but this is to give my body a break from the benzo's and reduce tolerance and then i will use them again because when they work they work well with no hangover effect for me and sleep quality is good and i usually wake feeling better. I have seen on other benzo boards of people using 50-60mg of valium plus a day, wow. If i cant sleep on say 10mg of valium or 15mg of zopiclone i dont bother increasing the doses as i think its just going to get to the rediculus stage of doses required for me to get to sleep, so i just stop using benzo's for a few days, suffer abit, sometimes im lucky and antihistamines will help me sleep.

    I actually had a procedure on my back at the beginning of the year where they used light sedation, midazolam IV and it made me a bit groggy but did nothing like what they said it would do to me and i regret having it and if i have the procedure done again i will tell them no to the midaz, as the midaz i think reduced my tolerance to my other sleep meds and i couldnt sleep properly for a week or so afterwards.

    My aim is to reduce my benzo tolerance and then use them again mainly on nights before i go to work or when on afternoon or night shifts, but selectively use them. But i think i will be cycling off them regularly to help reduce tolerance. Maybe what helps me to is that i dont take benzo's during the day for anxiety, so maybe dont get a rush from it or maybe i dont really notice a benefit from it that way because i dont really suffer from anxiety, my reasons for using it is sleep only. I dont toss and turn and worry about not sleeping until after a few days of no sleep and my head is about to explode, its just that my off button doesnt work, i dont have and deep seated worries that keep me awake, i actually suffer more boardem lying in bed not being able to sleep, boardem should put most people to sleep, lol, but me my off button doesnt work, thats the only way i can explain it. Also i have worked rotating shift work for over 20years from the age of 18 so i think that also might have played apart in my sleep problems ie breaking my sleep button, many years of sleep deprivation prior to cfs through shift work and being oncall etc.

    Thanks for the reply minkey, im interested in others experience with sleep problems and meds as i think we can all learn from each others experiences.

    cheers!!!
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The more i look into it the more i think its just me/cfs causing my sleep problems with some med tolerance. I have been looking through a few benzo boards and to be honest, with no disrespect but they just seem to be a different kettle of fish. A similar experience i had with a male hormone replacement board, they have their fatigue and sleep issues but are just different to us, they sympathize but dont really get it. Home is here i guess, lol.
  17. soxfan

    soxfan Senior Member

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    I have major sleep issues also. I can fall asleep with lunesta easily but never ever ever feel rested. I have had this unrefreshing sleep since about 2 years into this illness. Before then I had the best sleep and would give anything to feel like that again.
    I also have tried almost everything but it either leaves me too hungover or doesn't put me asleep and I still feel hungover. The sedation medications don't work at all for me because if I don't take enough I lay there all night or take too much and I feel hungover for the next 24 hours.

    I was trying trazadone at 12 mg liquid and it did nothing but when I took 16mg I got totally hungover and it still did nothing. I have never tried seroquil so that might be something to do.
    I also tried neurontin for the nerve pain in my leg and was hopeful it would give me a better sleep but I can only take 100mg at bedtime or else I will get hungover so 100mg isn't going to do much for me.

    This is definately the most serious problem for me and so far none of the doctors have been able to solve it . I know with CFS unrefreshing sleep is a problem so it is possible to wake up and feel well rested ever? I know if I could start off the day feeling better it would make a huge difference.

    I have also tried remeron-ambien-ambiencr-amyltripline(sp)-melatonin-lyrica-flexeril-and every otc sleep aid available..
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Some info i came accross recently searching the net, was that alot of people who use sleep meds with short half lives like zopiclone, zolpidem etc can get rebound insomnia or maybe day time anxiety etc, but i think this doesnt occur until someone has been on these meds awhile. So what i have been doing is lowering my dose of zopiclone and added some valium as it has a longer half life, so one of each tablet.

    Now i take these on nights im working, which is 2-3 days a week now and then dont use benzo's on my off days, this was when i really had sleep problems, so a combo of maybe withdrawal and med tolerance because the dam zopi wouldnt work and needed the break from it to start working again. So adding the valium has helped me in my benzo free days and i have been able to sleep some with natural stuff and some antihistamines etc which wasnt happening before hand. Having benzo free days helps reduce med tolerance and valium reduces rebound insomnia/withdrawals on benzo free days?? to clarify things i dont take valium on benzo free days but because of its long half life its probably still in my system at a low level.

    Now my sleep isnt perfect but fingers crossed it seems better. Last night i used tryptophan, phosphatidyleserine, melatonin, diphenhydramine(antihistamine), lyrica and slept from 10pm till 330am, so thats not bad for me and sleep quality was ok too. When on benzo's i then have a break from most of the supp as tolerance seems to occurr with them if used all the time too.

    I think things like trazadone, doxepin etc work well with benzo's to improve sleep quality but arent much chop on there own.

    cheers!!!
  19. WillowJ

    WillowJ Senior Member

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    lol, i thought you were going to ask your doc about flexeril?
  20. WillowJ

    WillowJ Senior Member

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    nice :) :thumbsup:

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