Discussion in 'Fibromyalgia Main Forum' started by janana, Mar 10, 2009.

  1. janana

    janana New Member

    Was prescribed Klonopin 7 yrs ago when pain and insomnia set in.
    Found it on this board and it was helping alot of women with those issies.
    It saved me at the time.
    I am no longer(by the grsace of God) in pain, and want to get off it.
    It is avery powerful drug.
    I am down to .5 and having trouble sleeping along with other withdrawl symptoms.
    Anyone else go thru withdrawl from Klonopin?
    Thanks! Janay
  2. 3gs

    3gs New Member

    Hi Janay
    Understand about withdrawing from benzos. They are one of the hardest most awful drugs to get off of. It can take up to 2 years to be completely free!
    My withdrawal landed me in hospital and a seizure!

    What symptoms are you having? My daughter was a detox tech and helped me. Drink lots of water and eat chocolate! There also is a detox tea you can drink. Have you talked to doc about something to help ease the withdrawls? Go slow. How fast did you taper down?
    They use valium to help go off of benzos. I'll try to find paperwork.

    good luck and try to hang in there
  3. luckyman

    luckyman New Member

    It sounds like your body is in need of a small amount of Klonipin. If it helps with sleep and anxiety, why are you trying to totally quit? A half a milligram once a day is a very small dose. Are you having side effects? I really never liked to take any medications, but will when I feel the positives outweigh the negatives. Dr. Cheney and others feel that it may help protect the brain of a CFS/Fibro patient whose brain is usually in overdrive, preventing loss of neurons from overstimulation.

    If you're concerned about taking too much, talk with your doctor and he can limit your prescription, may give you advice, or a different med to help you wean off the last little bit you are taking. Be aware that many doctors are being trained to use some of the newer meds such as Lyrica and Cymbalta, and away from pain meds and benzos. If you totally go off of the klonipin, you may have trouble getting a doctor to write a prescription at a later date. This is of great concern to me as well as many others. The only drugs that help me are hydrocodone, Klonipin, and amytriptiline. Good luck, and be sure you are part of the decisions made with your medications.
  4. janana

    janana New Member

    Thanks to U both !
    I am weaning off VERY slowly.
    Was taking 1mg to 1.5 for 6 yrs. After 2 mos., now down to .5, but NO sleep again last nite.
    Going on for a month and Im exhausted!
    I have talked to my doc alot about this.
    I am conflicted about taking the meds.
    Dr.Cheney says it's beneficial, but than I read all the horror stories about getting off Klonopin and I think it has got to be bad!
    Plus I am concerned about having to up the dose.
    And I really want to be able to sleep without drugs.
    Altho in 6-7 I have stayed at 1mg, except for occasional nights when I could not get to sleep.
    I run a daycare.
    All under 4, and I NEED my sleep!
    I know I have genalized anziety.
    The main cause for the last 4 yrs, being my only child, walking out the door and out of my life at 22.
    It has caused me deep pain,grief and anxiety.
    Klonopin DOES work for me. I never had any side effects that I could tell. Sometime a little hungover, when I RARELY took it during the day.
    I went 3 mos witkout sleeping when I was first diagnosed with fibro, and it worked!!
    I started sleeping and within a yr had my life back!
    I am NO longer in pain, but I do not know if not sleeping is because Klonopin is addicting, which many claim it is, or because I truly need it.
    My husband feels if I need it to sleep, I should take it.
    So does my doc.
    My Phycologist told me the docs in her office do not prescribe it anymore.
    BOTH Kaiser doctors!!!
    And I have read SO much aout the long term, BAD effects, it has on the body and brain ,it scares the hell out of me!
    I think they know alot more about this medication, than they did 10yrs ago and it is not good.
    I did bring up the protocol about using valium to come off the klonopin with my doc, and he did not want to prescribe another benzo if I was trying to get off Klonopin.
    Any feed back is VERY much appreciated!
  5. fifthofanickel

    fifthofanickel New Member

    Hi Janay;

    I only take Klonopin twice weekly in order to at least get 2 nites of sleep. I tried taking it every nite, but eventually didn't work for me anymore. (even w/upping the dose) So the doc upped the dose one more time & I take it as stated. I wish I could find something that would work every nite, but I've tried most everything there is, & no luck...

    I'm very med sensitive, & the stuff either upsets my stomach or doesn't work.It sounds like your brain has some seizure activity that it needs at least a small dose of the klonopin. I don't like taking drugs either, but the benefits vs. the alternative needs to be considered...I don't think I would worry over such a small dose...But then again, each of us is different.

    Best of luck in whatever you choose to do,,,
  6. janana

    janana New Member

    My mom suggested taking it a few nites aweek. So I might try that.
    What is your dose?
    Im down to.5 but cannot sleep. 1mg ususally worked well for me.
    My husbands thinks Ive got my self so worked up,(which I have) its all in my mind. Well it is in my mind and I am worked up cause I need to sleep!
    He is very supportive of whatever I nede to do, to feel better.
  7. brightsidedone

    brightsidedone New Member

    I have been on Klonopin for about 5 years and I'm guessing from what you've written, that I was given it for the same reasons you were. Recently, I too asked my doctor to lower the dose. Immediately, I saw a change and it was difficult to manage. I am still in pain and if I run out of Klonopin for even a few days, my world just begins to spin and I am sick to my stomach.

    My suggestion would be to grin and bear it. There are worse things in life than Klonopin and this is just my opinion, but how easy is it to set ourselves up to be "perfect" and then get upset when we "fall". It sounds like you believe in God? I do as well and I don't think His definition of "perfect" and my own, match.

    I was diagnosed with breast cancer this time last year. I had a bi-lateral masectomy in Sept and was put flat on my butt for months. This month is an anniversary for me and I've done nothing but cry because I'm too worried about my self image. I've realized after talking with friends that I'm not the "bad" person I think I am.

    Just a suggestion.
  8. janana

    janana New Member

    I have been thnking about that alot.
    I am a type "A", first born who always (but cant usually) always do the "right" thing.
    The fibro put things in a BIG perspective!
    I am VERY lucky to have my health back!
    Maybe Its OK for me to take something that helps me feel better. SLEEP!!
    Im just concerned I am pyscologically (sp) as well as physically dependant on it and should (theres that SHOULD word again!) beable to now sleep without it.
    I am VERY hard on myself.
    Thanks for the encourging words!!
  9. Robbie44

    Robbie44 New Member

    I too have been trying to get off Klonipin and am down to .5 from 1.0. Been taking it for four years. I don't sleep well even with the .5, but it gives me about 2-3 hours sleep. I'm wondering if anyone has tried Pro Health's FibroSleep and if it worked for them? Or if they have any other sleep remedies? I'm willing to try any alternative therapy (not a prescribed med).

  10. janana

    janana New Member

    Have a GREAT counslor anf belong to a womens group which is great therapy.
    The .5 does not help me sleep at all.
    Im wondering if afte benzo'z our body can ever put it self to sleep.
    May protocols for coming off benzos say to just do it slow and at your ownpace sand you will get thru it. But dang! it is hard.
    They tellyou klonopin is NOT addicting! Crap!
    I am very tempted to go bk to 1mg but since it is so very hard to get off of I cant imagine the long term damage it can do!
    Anyone been on it for over 5 yrs with good results?.
    I had NO side effects ,never felt hung over. It just heloped with the pain and the sleep.
    Thanks to all!
  11. Smurfette17

    Smurfette17 New Member

    It sounds like a lot of people are really trying to get off benzos. I too was trying to get off the Ativan, but decided to stay with it bc it helps with sensory overload.

    For what it's worth, this is what my husband has told me (disclaimer: he is a surgeon, NOT a psychiatrist). The main problem with benzos is not necessarily long-term effects like it will destroy your brain cells. The main problem is habituation, so that over time we may need more and more to get the same effect. So over time people have to keep upping the dose. However, it sounds like you've been at the 1 mg dose for years, without needing more? That's a good sign.
    [This Message was Edited on 03/11/2009]
  12. janana

    janana New Member

    I was just discussing this with my hubby.
    Yes, same dose for 7 yrs. Maybe and additional.5 if I just coudnt go to sleep or was overly stressed.
    Thats my biggest worry is I will need more and more.
    Just curious where did your hubby get his info?
    I a have trying to get that kind of info for a while.
    I have read so much scary stuff about pernament damage to menory ,physical problems, the lists are a mile long.
    Scared the heck out of me!
    But I think I am too hard on myself and if it lets me sleep and makes my life alittle easier I may need it.
    I am a high stress gal!
  13. namow

    namow New Member

    Yes, you read it right about 24 years taking 0.5 mg at bedtime, and it helped quite a bit until a few months ago, I'm not sleeping anymore, I tried 1 mg and it doesn't help, my memory is horrible and the anxiety is getting bad.
    At the moment with al the problems I am experiencing, I'm going through a lot of tests, MRI's, MRA's, EEG, Sleep Study etc. So far I have found out about the MRI and it is normal but the sleep study shows mild sleep apnea with other problems and one of the recommendations is to be off Klonopin.....HOW I'M I GOING TO GET OFF after all these years, it is scary.
  14. janana

    janana New Member

    I eneded up taking a total of 1mg last nite just so I wouldd get a decesnt nites sleep. It was better. But not as well I though it would after being down to .5 for a month.
    Wean VERYLY SLOWLY. Klonopin is a long lasting benzo which docs says makes its easier than others to wean off, but because the pills come in only .5 or 1mg it can be hard o do it VERY slow.
    I went form 1mg to chipping tiny pieces of a week sometimes 2wks at a time. I was OK until I got to .5 over a month ago.
    Anxiety went way up, and that was not really a problem too much when I was prescribed klonopin for sleep and pain 7 yrs ago. It is now.
    I feel tense and anxious most of the time!
    My memory seems worse, my jaw is tight and painful, mouth sore inside all kind s of funny things.
    Thats WHY I am trying so hard to get off thos stuff.
    If it is this hard to get off, of what long term damaging effects is it having on our bodies??
    But flip the coin and I have to sleep!
    Someone on here said they wean down to .5 and than usually the 1 mg works for them.
    It worked better than the .5, laast nite, but I feel alittle hung over this morn. But sleep is so important!
    There are ALOT of articles about weaning off Klonopin.
    Good Luck!
  15. janana

    janana New Member

    Please read the Ashtom Manuel on weaning off benzoz.
    Written by Dr Ashton ,it has helped MANY peole get off benzo.
    U can read it on line.
    Her protocol is for using Valium while coming off Klonopin.
    Many docs wont do it. Mine wont.(kaiser)
    But many think it's the way to go. Good Luck!
  16. Mikie

    Mikie Moderator

    It's not impossible to become addicted to Klonopin but it's more likely one will develop a physical dependence on it, making it very difficult to wean off of it. Withdrawal symptoms can be severe, even when weaning slowly. I've tried to wean down twice but the symptoms were more than I can handle at this time. Dr. Cheney believes that Klonopin protects our brains from early nueron death due to the common seizure activity in our brains. It is this seizure activity which can cause insomnia, tinnitus, anxiety/panic attacks, and sensory overload. The Klonopin has helped me with all these and the pain as well. Cheney believes that when one has reached a certain level of healing, it is easier to wean off. I simply believe I'm just not ready yet. In fact, the Klonopin works so well for me that I am prepared to take it the rest of my life, if necessary. I would rather wean off eventually but I work part time and need my sleep.

    There is a whole website devoted to weaning off benzos but I don't have the name of the website nor the URL. Good luck to you.

    Love, Mikie
  17. janana

    janana New Member

    Hi Mikie!
    I ended up taking 1mg last nite instead of the .5 I've been on for a month.
    Slept somewhat better, but felt hung ove rand anxious today at he same time, if that makes sense?
    The anxiety got less as the day went on.
    Maybe I need a dose somewhere in between?
    My goal is to get off completley.
    It's hard to ignore all the the negative stuff written about this drug.
    So Im trying .5 along with Sleep MD tonite.
    Alot of naturl herbs for relaxation and sleep.
    Keep your fingers crossed! :)
    Thanks! Janay
  18. greatgran

    greatgran Member

    After reading all your post I think you are doing more harm to your body by not taking the medicine. Some of us need these meds and I think Benzo's have a bad reputation but they are good drugs, just abused by some. Any med you take over time will have some side effects to your body. I would go with what you doc said, maybe you are ready to cut back but not go off of them . I can relate to how you feel as I take xanax, which has a worse reputation than klonopin but for now I need this medicine and my doc told me I was not ready to even cut back. My Rx is .05 three times a day, most days I only take two but when in a CFS crash I may need more. I have tried AD's but can't tolerate the side effects and I hear they are very hard to come off of.

    No sleep, anxiety etc. can play havoc with your body. As bad as I hate to take the xanax until something else comes along I will continue taking the medicine. I have been on about the same dose for 7 years, somedays I need more , somedays not it just depends on how my cfs and life is going.

    My husband takes 1 mg of ativan at night for sleep and he doesn't have anxiety or any of our DD's. The doc gave it to him for sleep, told him sleep was so important and the ativan works so he takes it and doesn't give it a second thought.

    Good luck to you in whatever you decide to do,
  19. LuvQuilting

    LuvQuilting New Member

    I, too, have taken this med for years (5-6 maybe). I take .5 at night but I also take 600mg of neurontin at night for neuropathy pain. They both just knock me out at night which is good. I just recently increased my dose of Klonopin to .25 in the morning for increased anxiety and irritiabilty. I'm almost 50 so I know it's caused by hormones and peri-menopause. That's something for everyone to think about. It has helped me tremendously! I feel normal and relaxed for a change. I'm hoping that once I approach 60 my hormones might be evened out and I can try weaning off. It does concern me about being on these meds but for now they are helping so much.
  20. janana

    janana New Member

    Very Little sleep last nite with .5 of Klonopin and the MD sleep.
    Fell asleep easily but woke in a few hrs,slept off and on for another hr, and than awake from 1-3:30am, when I fnally took another .5 of the Klonopin and fell asleep at 5 for an hr.
    Than when hubby left, slelpt from 7-8.am
    Too tired to make important appt. today and it just makes me so mad!
    Have been trying to reacch my doc at kaiser for over aweek.
    Calling him again right now.
    I feel like a failure that Iowto the.5, from 1.0-1.5 at nite.
    Im thinking I might have to take 3/4 of a pill to get more than a few hrs of sleep a nite.

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