withdrawal from klonipin, any advice?

Discussion in 'Fibromyalgia Main Forum' started by frankie78, Apr 19, 2007.

  1. frankie78

    frankie78 New Member

    Hi.

    So. My doctor is putting me on xyrem. Which is fine, and good. Mut before I can start it I need to be completely off klonipin, which is a problem. I take 1.5mg at night, and have been on it for 7 years, on and off for 10 years. I cannot fall asleep without it.

    To tell you the truth, I will be glad to be off it, but I am very addicted to it, and am very nervous about stopping.

    Does anyone have any advice for withdrawal? I thought people might know of supplements that work on the same receptors, and that might help?

    Any advice, please! Very scared.

    Thanks!
    Frankie
  2. knitsnfits

    knitsnfits New Member

    Frankie, The doc that is taking you off of klonopin should be able to give you a taper schedule to follow. Benzos are hard to get off and you need someone who knows what they're doing. It should be a very slow taper. Good luck!
  3. elliespad

    elliespad Member

    I believe Klonopin acts by increasing GABA. You can buy GABA in the health food stores. Ask your doctor about this first.
  4. frankie78

    frankie78 New Member

    my doctor gave me a schedule. i should be off them in 2 weeks. seems short, right?

    thanks for the info on GABA. i'll ask him what he thinks.

    does anyone know if GABA helps you sleep? i just have this picture in my mind of lying in bed ALL NIGHT. uhg.

    frankie
  5. redtex

    redtex New Member

    most recomendations are to taper off for months after being on it for that long. supplemental gaba is not supposed to pass the brain barrier. good luck, and let us know how it goes.
  6. LouiseK

    LouiseK New Member

    I was thinking of starting klonipin for sleep and restless leg which is spiraling out of control. Would you mind telling me why you are happy to stop taking it?

    Thank you and good luck with the change. Please also post about the Xyrem. My MD wants it too but I am too afriad.

    Please comment on the Klonipin if you don't mind.

    Good luck.
  7. pawprints

    pawprints New Member

    My doctor let me stay on the Klonopin and the Xyrem. I had anxiety from the Xyrem, but may try it again. I am only on .5 per night.

    Check and see if you can stay on a low dose along with the Xyrem.
  8. Slayadragon

    Slayadragon New Member

    Aren't you on Valcyte at present?

    If so, going off Klonopin before you're taking something else could be extremely difficult.....not just because of the addiction, but because Valcyte in general ruins sleep.

    Even people without much problem sleeping seem to have a hard time sleeping when on that drug.

    Is there a reason why you can't take Valcyte and Xyrem together for a little while and _then_ phase off the Klonopin? Maybe start with a low dose of Xyrem and then increase as Klonopin decreases? (I don't know if they interact.)

    Is the doctor prescribing these meds the same one that's giving you the Valcyte? If not, or if the doctor's not really familiar with Valcyte (I can't remember who your doctor is), the idea that sleep might be _such_ a problem at this particular moment in time might not register.

    Personally, the thing that has helped my sleep the most while on AV's is human growth hormone. I believe that Xyrem creates such deep sleep that the body naturally makes hgh, and so maybe that's consistent with my experience. On the other hand, if Xyrem is a toxic drug (is it?), taking it in combination with Valcyte (another toxic drug) might be a lot for your system.

    Most insurance companies won't pay for human growth hormone, unfortunately. I think the amount I'm taking (.2 mg, which I think is 2/3 iu) would cost about $400 per month. That's a lot, but maybe not so bad if it's just temporary.

    Of course, most doctors know a lot more about conventional sleeping drugs. Hopefully whatever you do will work for you.

    How long does your doctor want you off klonopin before you take Xyrem? If you're only addicted in terms of sleep, maybe just discontinuing the Klonopin totally and then starting on the Xyrem would be the best strategy. I think that Xyrem is pretty strong.

    The one thing that I would hesitate to do is to take Klonopin at the same time as over-the-counter sleep medications. I know that tranquilizers and kava kava mixed has caused deaths and comas, and I believe that tranquilizers and valerian have also. The same thing might be true of the amino acid GABA too. I'm of the impression that it's pretty much impossible to do any harm to yourself with just benzodiazapines alone (even if taken in high quantity), but that mixing them with alcohol or the substances above (maybe also others) is much more dangerous.

    Be sure to research anything you consider taking along with any prescription tranquilizer or sleep medication for interactions---it would be sad to go into a coma and/or die just when you're on the verge of getting better as a result of the Valcyte!

    Regardless of what you do, good luck.

    Best, Lisa

    [This Message was Edited on 04/19/2007]
  9. nina_and_me

    nina_and_me New Member

    I would definitely ask the doctor about this again. He/she may need to be reminded of just how long you've been on klonopin.

    I have been on klonopin for about 4 years. A doctor (not the one who originally prescribed it) told me that I only needed 2mg, not 3mg, and he told me to just cut back to 2 mg that night.

    I was taking it not just for sleep, but also for anxiety. I started tapering off by 0.25 mg per night, and by the end of the week, I was at the doctor, not at work, and very sick. I was cold, I was nervous, and I could not function. I couldn't imagine the small reduction in medication could do that, but it did.

    The doctor (who prescribed the original dose) told me that when tapering off of a benzodiazepine, she would gradually decrease it by 0.10 mg or .175 mg (I don't remember which one) per day and do that for two weeks. If everything was okay after two weeks, go down another 0.10 mg. But, she did not want me to cut a 1 mg pill into fourths or eighths - pills do not contain the same amount of drug in each 1/2 or 1/4. She would have prescribed the lowest strength possible.

    I also used the word addiction to describe my feelings about that drug, and she my doctor said that my body and mind are dependent on that drug, but that I am not addicted to it. She said that it is not the same thing. To her, it was an important distinction. To me, it was just a word.

    I've tapered off many medications, including adderall, and some have been harder than others - klonopin was by and large the most difficult one I've ever tried to stop taking, and it only lasted five or six days. I urge you to speak with your physician or another physician. Your pharmacist would be a very good source of information. In my experience, that drug is very hard to taper off of, much less stop cold turkey.

    nina&me
  10. frankie78

    frankie78 New Member

    hi.

    the reason i'm happy to be going off klonopin is not because i found anything inherantlt wrong with the drug; in fact i know it helps many many people. the decision is more personal for me. at this point (well, since the beginning really) i am very dependent on it. i use it as a sleep aid, and if i do not take it i just don't fall asleep. all night.

    how that i am really sick and spend all the time ay home this is not such a problem. but when i was younger and my (now) husband and i would want to sleep over someone's house at the last minute, or when i was traveling back and forth to college, if i forgot my klonopin i was out of luck. no sleep for me.

    i've also run out (brainfog and all) and had the same thing happen.

    it's just scary to me to be so dependant on something. but that doesn't mean the drug wasn't helpful and necessary - it was. ever since i got CFS i've had awful insomnia and klonipin really helped.

    as far as xyrem goes, i can't really comment on it as i've not started it yet. my doctor wants me to switch medications because he says the quality of sleep with xyrem is markedly better than other sleep aids, and this might help my energy level (which is crazy low).

    i hope this helps! let me know if you have any other questions.

    frankie
  11. frankie78

    frankie78 New Member

    thank you so much for all your advice!

    my doctor says i cannot take the klonipin and the xyrem together because they interact. i think complicating the situation is the fact that i'm on tegretol for seizures, which i can't change, and which interacts in the same way, so maybe in another situation it would be okay to stay on .5 mg of klonipin but not mine? i'm not sure.

    i take the klonipin strictly for sleep, and he knows how long i've been on it. my impression was he wanted to start me on the xyrem as quickly as possible BECAUSE i'm on the valcyte and he knows i can't sleep. i can start the valcyte as soon as i'm done tapering the klonipin.

    what i'm supposed to do is halve the dose for 5 days, then halve THAT dose for 5 days, then halve the dose again. i should be done in 15 days.

    i slept okay last night remarkably, (snoring DH was out late and i think that helped.)

    i will look up valerian, kava kava and GABA interactions. i was hoping to get some relief from supplements, but not at the expense of a coma.

    thank you so much everyone for your advice and support!

    frankie
  12. 2tired4words

    2tired4words New Member

    Hi Frankie,

    I agree with the person who mentioned that a 2-week tapering schedule off a benzodiazapine is insanely short! Should be done ever so gradually... more like 2-3 months.

    Regarding GABA, someone else mentioned that supplemental GABA does not pass through the blood-brain barrier and this is correct. I took supplemental GABA for years with no effect. Then I went on the prescription version called Neurontin (generic = gabapentin) and it was a great help - with pain, sleep and mental functioning.

    I recently read that gabapentin is now given to help people with benzodiazapine withdrawal. A Google search on "gabapentin-assisted benzodiazapine withdrawal" should get some good results for more info.

    Best of luck to you!
  13. Slayadragon

    Slayadragon New Member

    Hi Frankie,

    What do you mean by "addicted"? Do you have other symptoms other than sleeplessness if you try to cut back?

    How long does your doctor want you to be off the Klonopin before you start Xyrem?

    If your only "addiction" to Klonopin is not being able to get sleep, and if you can start the Xyrem almost immediately after getting off Klonopin, I'd be inclined to considering just dropping the Klonopin all at once and starting the Xyrem.

    I realize this is not the usual approach, but (if the above is true) yours is not an usual situation.

    Getting worse sleep for two weeks (much less two months) while you wean off Klonopin seems like a very bad thing considering that you're on Valcyte.

    And from what I've heard, Xyrem is extremely effective at giving extremely deep sleep. (I'd be concerned about side effects, but if that happened you could go back to the Klonopin.)

    Anyway, I'm in the situation of just needing Klonopin for sleep (now that I'm on an antiviral especially) but nothing else. That's how I personally would do it at this point in my life (e.g. in the middle of antiviral difficulties).

    Of course, your situation may be different than mine, and your doctor's recommendations need to be taken into consideration.

    Good luck....

    Best, Lisa
  14. Slayadragon

    Slayadragon New Member

  15. pawprints

    pawprints New Member

    Good luck with your situation.

    My information comes from 3 doctors...including a sleep specialist. In the beginning, Xyrem can be difficult to find the right dose and therefore, to fall asleep with.

    Each person must do what is best for them and speak with the physician who knows their individual experience the best.

    I was just adding my experience to your question. Here's hoping the Xyrem and the Valcyte work wonders and make you feel well.
  16. foxglove9922

    foxglove9922 New Member

    Holy moly, Frankie, weaning off 1.5 mg of Klonopin for as long as you've been on it in 15 days sounds, like others said INSANE.

    I tried reducing my dose 1 mg by cutting the pill in half for a week and never slept a wink.

    My doctor said, okay, tonight don't take anymore Klonopin and just start the Xyrem.....walla.

    Why, how long does Klonopin stay in your system. Can't be long because I've accidently gone without a couple of times and never slept at all and instant withdrawl symptoms.

    I'm starting Valcyte in a few days and have some serious issues about the sleep disturbance reported with this AV. I'll contact my physician should this be my case as I'm already having sleep issues.

    best wishes to you and please do keep us posted.

    Foxglove
  17. frankie78

    frankie78 New Member

    i'm doing much better than i thought i would. i've been adding xanax (which i'm not dependent on & should be able to stop no problem when i start the xyrem) and valerian root (which i know you're not supposed to do but i was kind of desperate). there have only been two or three nights when i didn't sleep much at all.

    right now i'm on .33 mg (1/3 tab), and tomorrow i halve that dose. if that dose is too difficult i think i might call the Dr. and ask if i can do what you did, and just start the xyrem. i think the dose should be low enough. we'll see.

    to answer your question, i think that klonipin has a 12 hour half-life, but i'm not positive.

    my sleep problems got better when i had the brilliant idea of taking the valcyte in the morning instead of at night. the fact that it took me so long to come up with the solution says a lot about my cognitive abilities. i have found that it greatly helps with sleep.

    i hope your finals go well, and i hope your beginning with valcyte is as painless as possible (while still be very effective, of course!!)

    best of luck,

    frankie
  18. Waynesrhythm

    Waynesrhythm Member

    Hi Frankie,

    In case you're still interested in finding more information, the following site is the best I've found regarding benzodiazepine withdrawal. It was my primary guide as I tapered off of clonazepam (which I took over a year to do).

    http://www.benzo.org.uk/manual/contents.htm

    I've noticed others on this board have posted this website as well.

    Re: GABA -- I tried GABA at one time, and didn't notice anything either. I then talked with a woman at Wellness Works (Atlanta, GA -- 404-266-0386) who recommended a brand of specially formulated GABA that could bypass the blood brain barrier. I decided to try it and did notice a big difference.

    The product is Ultra GABA 500 by Research Nutrition.

    Regards, Wayne
  19. swedeboy

    swedeboy Member

    I just started taking 1.5 clonazepam. And all of this discussion about withdrawal has me concerned. Other than rebound insomnia what are the sympoms of clonazepam withdrawal?

    thanks, Sean
  20. frankie78

    frankie78 New Member

    hi.
    the only other effect i have is shortness of breath. i kind of feel as if someone was sitting on my chest. i figured out that unfortunately coffee mekes this person 10 times heavier. the first few days i was in a bad mood as well, but nothing i couldn't handle.

    while i was on klonipin i found it very helpful, and i know many other people do too.

    hope this helps.

    frankie