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Desperately need help with failed Klonopin/Valium taper - life is a mess

Discussion in 'General Treatment' started by Bunchy, Jan 8, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When i used phenibut, i didnt notice any effect from it until i used 2500mg at a time. Also just to compare my benzo dosages i use is mostly only 5mg of valium and occassionally 10mg, i alternate valium with either zolpidem or zopiclone and have been on these types of meds for last 10 yrs since having ME. I dont use these meds during the day for anxiety, i dont believe i have anxiety just severe insomnia. I also use other meds with benzo's for sleep like antihistamines and/or neurontin or lyrica etc plus sometimes herbal stuff. I just mention this so u can compare phenibut dosing with other benzo's, but i think its a trial and error as i have heard people feeling sleepy from 500mg of phenibut.

    Kava and withania are other natural options that may help with anxiety type symptoms.

    cheers!!
  2. Valentijn

    Valentijn Activity Level: 3

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    In the case of ME/CFS, anxiety might be the result of high levels of glutamate, an excitatory neurotransmitter. Getting those levels down could help a lot.

    One way to do it is with Lyrica, which converts glutamate to an opposing neurotransmitter, GABA. But this might be problematic to take while you're still on Klonopin.

    More useful might be using N-acetylcysteine (NAC), which can lower glutamate by combining with it to form glutathione. NAC is available without a prescription, and free of serious side effects unless you're prone to getting cysteine kidney stones.
  3. AndrewB

    AndrewB Senior Member

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    Hi there. I was wondering after reading the post (dated Nov) how your getting on ? I had a similer instance where i had to come off Benzo's and was out onto Zopiclone (might have another name depending what country you live in) and the transfer from one medication to another went easily and without any withdrawals.
    However, im coming off Zopiclone, and the stress on my body has made me very ill, ive been housebound any way since my latest flare up (7 months so far) but im pretty sure that had i not been on any of this drugs at all, my detox, poor as it is in us with M.E would have been better able to cope.

    PS as a side note, i was put on 400MG of Tramadol a day for pain, it worked wonders, but did suppress my breathing a little and also, i think contributed to my latest long lasting relapse. For me, the pain was always intense, but my fatigue is disabling so i do need to come off everything and see if my bodies Detox system gives me any relief from this crippling fatigue.
  4. caledonia

    caledonia

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  5. Freddd

    Freddd Senior Member

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    Hi Caladonia,

    The benzo.org.uk has some of the better information on the web. It's where I send people to learn about these kinds of tapers The schedules they have are typically 2% per day and generally are based on the Ashton method with an A and B liquid valium to allow the small dose with controled decrease at the end of the taper. The tapers I provide are very similar except that I don't use the A-B liquids, though they can be used and I generally use 1% daily decrease rate with all tapers custom calculated with any drug, though valium is best for the bulk of the taper. Also, I do some things with timing that breaks up the body's conditioned response and separates bringing the peak down and the trough down. To do a crossover to valium works well as does the a-b liquid method but it requires more cooperation from a doc than many docs are willing to give. These tapers appear to be generally based on the 1940s US V.A. hospitals methods for tapering barbiturates which are more deadly to taper incorrectly than benzos.
  6. Nielk

    Nielk

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    Fredd:

    Is it possible that eventhough I don't feel the benefit, that my body/nervous system just needs the Klonopin to function?
    How is one sure when hey have terrible side effects coming off a tiny bit that it's withdrawal symptoms or just needed by the body?
  7. Rockt

    Rockt Senior Member

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    Hi NielK.

    Not answering for Freddd, just wanted to respond with my own experience. I've been tapering off Clonazepam (Klonopin) for approx. 9 months with Freddd's help. It's gone very well and I'm nearing the end.

    When I first started taking Clonazepam, it was for sleep. I'd wake up at 3 or 4 in the morning and not be able to get back to sleep. Of course the longer I lay there, the more frustrated I became and it made it impossible to get back to sleep. So I was prescribed .25mg
    (1/2 a .5mg pill). Such a smal dose, what harm could it do? And man, what a great drug! Slept through the night for the first time in years. After some time, (can't really remember - a year or so?), I started to get some minor sleep trouble again, so I started taking the whole pill. Again, worked great. Then after some time, started needing 1 1/2 pills...

    Started experimenting with B12 and metafolate, etc. and found I was tired at bedtime for the first time in years. At the same time, I heard someone out here say that benzos cause them to have sleep apnea, which I'd been having more frequently. So, I thought, since I might be sleeping better with the B12 protocol and since the benzo might be causing or at least contributing to the apnea, I'll stop taking it. I knew it might be "mildly" addictive (the medical establishment's term), so I thought I'd go slow and reduced my nightly amount by 1/4 pill. Well, I didn't sleep a wink and felt like I had a knife stuck in the back of my head. Plus, my muscles were twitching out of control. Hmmm, might not be as easy to stop as I thought.

    I started a discussion out here and got great advice, including Freddd's. And while I appreciated Freddd's hearfelt help, I wasn't about to just take his word for it. He's just some guy, right :) So I read as much as I could and a funny thing happened - I came to the realization that his taper method was the easiest, but also that it made the most sense. Reduce the dose gradually, but also change the body's (gaba receptors) conditioned response of getting the benzo at roughly the same time every day (at least that was my case - bedtime every night). So I got started and as mentioned, it's gone well. It hasn't been perfect - at times, especialy early into a dose change, I've been edgy and sometimes have even lost my temper. That hasn't happened for months though.

    So if I may offer my humble opinion on your question, "Does your body need Klonopin?" Yes and no. Yes, because your gaba receptors are conditioned to getting it, (aka addiction), and no, because we are not meant, as humans, to take or need benzodiazepines.

    I'm not telling you what to do, you have to make that decision. But I think benzos are insidious and in my case, worth the effort to break their addiction. I think you should read as much information about benzos and tapering off, and then decide what to do.

    Good luck.
    Nielk likes this.
  8. AndrewB

    AndrewB Senior Member

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    Im stunned nobody has been offered a Zopiclone detox, which i think is also listed on the UK benzo site. Ask your Dr about it as it really does work,
    its just i used it longer than i should i think....
  9. taniaaust1

    taniaaust1 Senior Member

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    This is a scary thread for me to have read thou I do know about the dangers of addiction to these drugs. Ive recently started Valium on the 1st Jan but at a very low dose 2.5 to 5mg. I thought the 2.5mg Valium was helping me to get to sleep (seemed to be working as well as the over the counter sleep aid- anti-inflammatory doxylamine succinate does for me which works about half the time for me).

    Now that 2.5mg dose seems to be doing nothing at all, with me only getting to sleep at 8AM this morning :( (with previous 2 nights almost just as bad). So Im now going to have to try the 5mg dose... right now Im wondering just how far up the amount the doctor (a CFS specialist) will get me to try and if its even going to work.

    Previously for anxiety (not sleep) was on Klonopin at the wee dosage Dr Cheney recommends or lower (0.5mg tablet at night but I was also splitting up that tablet and taking only a quarter or half of it).. but only short term as thou it did help great with the constant anxiety I was getting at the time (which I havent had now for quite a while).

    That very lose dose Klonopin thou, it ended up working far too well on the anxiety as I ended up getting a severe paradoxal reaction to it (became "I dont care about anything, Im not scared of anything" and when then fearless tried to jump over a boucany with no fear at all of injury. On even such a wee dose, I lost fear of things one needs to be fearful of. (I'll give it a 10/10 thou on treating my anxiety!)

    Dr Cheney's advice on Klonopin http://aboutmecfs.org.violet.arvixe.com/Trt/TrtKlonopin.aspx
    Dr David Bell also supports low dose Klonopin.

    From what Im reading here is that many doctors are putting those with ME/CFS on much higher doses.. which as we have long term illness is likely to end up causing us issues.
    ...

    To the original poster. I hope you are managing to taper off okay now. I really hope too that you've told your treating doctor of your issue as you should have a doctor supporting you with this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tania some of us need sleep meds, just have a plan in your head of what the max dose u will use, good eg is dont use more then 5 mg valium and maybe no more then every second night as this can help u avoid tolerance issues, other nights use doxylamine and or melatonin, mix and match these sleep meds around but keep does constant and if something stops working while on these low doses then just stop it all together for awhile and replace it with something else. The secret i think is not to fa;ll into the trapp of continually increasing your dose when it stops working, because they all stop working at some point but when on higher doses its much harder and dangerous to take breaks from these meds. Many docs just dont seem to care about their patients so dont tell them the dangers of going too high, i think. I think these are useful meds but we need to learn alot about them and dont take our docs word as gospel??

    cheers!!!
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    someone mentioned earlier about zopiclone, this is a good sleep med and a lower risk of dependence then other benzos, something else to consider and rotate between.

    cheers!!!
  12. Nielk

    Nielk

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    From the website about tapering off Benzos that caledonia was nice enough to post earlier.

    It hit me, after reading this that it is very possibel if people stay on a constant dosage of Benzo's that after a while, they develop withdrawal symptoms just by NOT INCREASING the dose which their body is craving. In other words, just standing at a specific dose for a while, is withdrawing from the med since the longer you take it, the more you need.

    Might this explain why I have constant headaches and feel like my head is going to bust? Could it explain my bouts of depressions out of the blue?

    This might also be the case with bunchy (whose thread I kind of hijacked - sorry)

    Thank you to everyone who gave advice her and to Rockt who explaine his experience tapering off with Fredd.
  13. Rockt

    Rockt Senior Member

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    This is exactly what was happening with me and probably most (all?) benzo users, (at least with the long half-life benzos like clonazepam - don't have experience with shorter h-l ones). I'm pretty certain that whatever you take a benzo for, (anxiety, sleep), will eventually get worse because of this tolerance/withdrawal syndrome. It's also why I think Dr. Cheney is wrong. Strong opinion, I know, but I'm speaking from (bad) experience. I've had arguments with a couple of docs about this, too and they steadfastly deny anything other than the possibility of "mild" addiction. I can assure you that my addiction is anything but mild.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Nielk i think what u mention can be the case as in withdrawal symptoms, but i also think that some of us just cant sleep due to some type of damage to the sleep part of our brain. I say this because there are a few with ME who have ongoing sleep problems who have never used benzos or sleep meds and continue to sleep poorly. I think it then comes down to a personal decision to try tapering off and then see if one is still left with a sleep disorder or are able to sleep somewhat normal drug free, which i think is a hard decision to make. I have thought long and hard about this as i continue to have sleep problems but also find meds help me alot to maintain the function i have, i also remember the poor sleep i was having prior to using sleep meds, so i find it hard to think it is something to do with using sleep meds that is why my sleep is so poor. I have also managed to keep my dosages down and tolerance issues to a minimum by rotating between a few substances for sleep, this doesnt always work but it helps. My main reason for not trying to stop sleep meds is that they help me to fit into the non cfs/me world and function in it, if i did not have to function and work in a normal world then i would be able to sleep when i needed to etc with a whacky sleep cycle.

    Its a tough one and good luck to those who are trying to withdraw, i am interested to see how u guys go. It would be interesting to see peoples tapering plans for future reference.

    cheers!!!
  15. Freddd

    Freddd Senior Member

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    I have a lot of personal experience with diazepam and lorazepam, more than 20 years worth. I started at 10 mg of valium a day and ended up at 30. Any given dose only works for me for about a week, for sleep but works longer as a muscle relaxant. I get single dose re-accomodation from diazepam and have to do a mini-taper with lorazepam after wards. So not I rarely use diazepam except for really severe spasms the lorazepam doesn't handle. I get the spasms from damaged neurology.

    I have personally trialed over 100 drugs through the years with all the docs trying to handle my problems without using opioids for my severe chronic pain problem. That is taken care of wirth morphine. Most were so terrible in effects and side effect causing that I never got established on them. Since starting the active b12 protocol my monthly pharmacy bill has dropped from $1500 to under $60, and many of those had to be tapered.

    In the last 20 years I have helped thousands of people sucessfully taper every kind of medication, regardless of previous bad experiences, including hundreds on benzos of every description and thousands on opioids and quite a few on SSRIs, antopyschotics, antiseizure, sleep medications, nasal sprays, Stadol and others. Clonazepam is by far the worst and nastiest drug for tapering I have ever run into. Morphine and oxycodone are terribly easy to taper compared to clonazepam.

    Clonazepam can have that "single dose reaccomodation" problem that I have with diazepam. It is a function of the long halflife.

    The good news is, and this is from personal experience of 17 years of severe CFS/FMS+, and lifetime of milder forms is that the tapers can be done sucessfully and uneventfully. Normal sleep can be restored. Sleep disorders are a defining characteristic of FMS and b12 deficiency, the same sleep disorders. Methylb12, adenosylb12 and Metafolin all help restore normal sleep AFTER one gets through the intial usual excitatory startup. It can take a year or more as the neurology in the brain heals.

    The only times I have to use lorazepam for sleep is when the bed is too uncomfortable, which means when traveling. I need at least 8 inches of memory foam under me to be fully comfortable. I have a very messed up back from the car wreck in 1972.
  16. Rockt

    Rockt Senior Member

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    [/A month ago, with all this support, I tried to taper 1/10th of the dose and progressively felt worse and worse where I didn't even recognize my personality. I was sooo edgy! I couldn't take it and went back up to my usual 3mg and even then it took about two weeks to get back to "my normal".
    B]


    I forgot to mention that 1/10 or 10% is way too drastic. I've heard that with someone taking higher dosages, you can taper more aggressively, but still nowhere near 10%. I never went greater than 1% and still felt edgy sometimes.
  17. Nielk

    Nielk

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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    try cutting the pill in 1/4 and then crush it and try to seprate it evenly into halfs or 1/4s again, buy some empty capsule from health food shop and put the crushed med into the capsule, so each capsule should be either an 1/8 or 1/16 of a normal pill.
  19. Nielk

    Nielk

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    Thanks for the practical advice.
  20. Freddd

    Freddd Senior Member

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    Hi Nielk,

    I use a daily reduction rate of 1% or less, even down to 1/4 of 1% in some situations. The way to make thye caps with cvery close doses is to crush the whole pill. To get 8 doses from it mix well with 2 measuring spoons of say 1 teaspoon or 5cc each, and then measure it out with the 1/4 tsb measuring spoon. To got to 16, 4 teaspoons total. To go to 32, 8 teaspoons and so on, into capsules. Works great. I use flour to mix with. Any other neutral item that is a fine powder works well. I store the ones not using that day in a sealed bottle in the fridge. Then I genrate with a program a table showing the timing between doses that can be adhjusted quite precisely. It's much easier than trying to figure out how to do .13265mg or whatever. Also there are a lot of other advantages to taking the doses at slightly different tomes each day as it breaks up the conditioned responses of the body to the expected dosing time. Also, becasue of the way it is done, the peak where tolerance happens is lowered at the same time as the trough is raised lessening the likelyhood of withdrawal. So withdrawl is done in multiple different stages
    taniaaust1 likes this.

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