Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Sep 30, 2010.

  1. Bunchy

    Bunchy New Member

    Hi all,

    Has anyone here taken Klonopin, Valium or any other benzodiazepines long term?

    I ask because I have taken them for 10 years.

    Initially I took them prn but then every other day due to tolerance and withdrawal effects between doses. I was coping fairly well like that and had managed even to reduce the doses by about half what I was taking three years ago.

    Earlier this year, I went through a very stressful period and since then I have suffered severe interdose withdrawals.

    I need them for severe neurological pain and internal pressure and vibrating sensations but I don't know whether I should raise my doses. My doctor has given me the go ahead to take extra prn but I am scared that further down the line, the same thing might happen and I will need more again.

    I can't bear the interdose withdrawals which include racing heart, chest pain and severe anxiety but when I take them my "nerve pains" all but disappear (and I have nerve pain all over AND inside my body which is why they were originally given to me as no other drug even Neurontin etc worked and I was in extreme agony)

    So if anyone has been on these types of drug long term, have you had to raise your dose or what else can I do?

    Love to everyone,

    Bunchy x
  2. greatgran

    greatgran Member

    I have taken xanax for 10 years.. Like you I was taking prn but then with the cfs I started taking up to 4 doses a day same dose just everyday.

    My last doctor's visit he upped my dose at bedtime and stressful times I will take more if needed.

    I take 1/4 mg 3 times a day and 1/2 mg at bedtime. I think benzos are great meds for most of us and at my age I will probably be on them the rest of my life. I can't tolerate antidepressants .

    If your doctor is ok with this take them and be thankful for them.. I struggled with to take or not to take for years. Most of the doctors don't want to give them and that is the only concern I have is when and if I ever have a doc that won't give them to me.

    Benzos are good drugs with a bad reputation.

    What kind are you taking and your dose?


    [This Message was Edited on 09/30/2010]
  3. goneee

    goneee New Member

    I agree with greatgran. I will probably be on Xanax the rest of my life. I have been taking this drug for almost 10 years. At first I fought taking it right and left, but now I know it is the only thing that helped with my anxiety as well as panic attacks. When I first started taking, I was only taking 1/2 of .25 mg as needed, but when I finally got it through my thick head that dose was doing nothing, I decided to listen to my psychiatrist. I am so glad I did. Yes, I do take .75 mg five times a day and I have been instructed by the doctor that I can add .25 mg to .50 mg if needed. Due to the stressful life I have been under for the past 8 years, I just thank God Xanax is avaiable for me. I have never had any side effects as I did on anti-depressants, so for now I am happy.

    If there does come a day when I think I can start tapering off, I will do so, but for now there I will continue with the Xanax.

    Xanax has been around for a long time and I do think it has been given a bad reputuation by drug seekers. I am in no way a drug addict, but I do realize, as in any beno or anti-depressant, a person builds up a physical dependenacy and I could not just quit cold turkey without harsh withdrawal.

    So I guess the question is, do you want to live everyday in extreme misery and miss out on the joy of life, or do you want to try the medication and see if it will help you be able to lead a more productive and happy life? To me life is too short to live with anxiety/panic disorder when medication is available.I want to enjoy the precious moments we have been given and not miss a one.
    [This Message was Edited on 09/30/2010]
    [This Message was Edited on 09/30/2010]
  4. heapsreal

    heapsreal New Member

    I know u said u have tried neurontin but its relative lyrica i think works abit differently and definately has more of a calming effect similar to benzos as well as good effect on nerve pain which has helped me alot when i get bad back spasms(chronic arthritic back), u know the ones where u cant move. I have also read that lyrica is good for anxiety and has been used for benzo withdrawal. Another med that maybe of use to u is baclofen, it is a different type of benzo and is used for muscle spasms and i have found helpful for sleep as well. The other thing u can use in between your days of benzo use for sleep is an antihistamine like phenergan or atarax. You can use the above things while slowly tapering off benzos if thats what your trying to do or just keep using benzos every second or third day. but in the end if the benzos are helping just stay with them.

    hope it all works out for u,

  5. gapsych

    gapsych New Member

    I have been on Klonopin for 15 years and have not had to increase the dose. I was originally given it for RLS, restless legs syndrome.

    It sounds like you are going through withdrawal between the doses. Not because of any addiction but because your body gets used to it.

    My neurologist says it helps calm an overstimulated nervous system. I don't feel dopey on it but closer to normal as far as system overload.

    Klonopin has a longer half life than other benzos. Supposedly this means that there is less chance for addiction.

    If I need to take it the rest of my life, so be it. I did have anxiety attacks in my 20s. They were awful but fortunately disappeared. Anxiety is self feeding and becomes a vicious cycle. We sometimes need these to stop the cycle.

    The klonopin (clonazepam) has also helped with pain but mostly the RLS.

    How much are you taking? I take .5mg. in the AM and 1mg. at night.

    Good luck.

  6. Bunchy

    Bunchy New Member

    Thanks for your input.

    I'm glad Xanax has helped you so much :)

    Do you find yourself getting interdose withdrawal at all though??

    I'm taking 0.5 Klonopin nightly and 10mg Valium - as I am only 41 and in the UK, I'd like to get the dose down as I worry a change of doc (we want to move out of London in the next few years) might cause problems even though my current doc precribes double what I currently take.

    I'm glad you had a good day the other day - isn't it frustrating that the next day you feel worse again :( I can so relate!


    Bunchy x

  7. Bunchy

    Bunchy New Member

    I agree with you and Greatgran but in the UK they are very wary of prescribing these types of drugs especially more recently.

    I currently have a doctor who is OK with prescribing them but my DH and I may move out of London to a more rural area in the next few years and I know it will be hard to find a doc who will agree to give me what I currently am prescribed at the moment.

    I'm going to try to carry on cutting down a little - I am managing to stabilize by taking a dose daily now instead of every other day as before - but if my body can't handle tapering, I will just continue my current dose and hope I will get given what I have now in future.


    Bunchy x

  8. Bunchy

    Bunchy New Member

    I have tried all those drugs you have mentioned and they do nothing for me and Lyrica made me feel nauseated and "drunk"!

    I'm going to see how I go with trying to reduce a little - I have already reduced by half over the last three years - and take it from there.

    Thanks for your input. I might ask my doc about Atarax as I had that many years ago and it was quite good at reducing anxiety and helping with sleep.


    Bunchy x
  9. Bunchy

    Bunchy New Member

    Yes it was interdose withdrawals as I have now started to take a daily dose not every other day as I was doing up until a week ago and have found my interdose withdrawals have reduced significantly.

    I would ideally stay on Klonopin for all the reasons you describe - sensory overload, pain, anxiety etc but I'm terrified that I may need more and more over the years to keep the effectiveness.

    I doubt very much that a doc outside London where I live at the moment would agree to keep upping my doses as tolerance catches up and that's why I'm trying to keep reducing (I've already reduced by half what I was taking three years ago) in anticipation of a new doc in the middle of a rural area deciding not to allow me what my current doc allows me.

    BTW I love your posts :)


    Bunchy x

  10. Molly B

    Molly B New Member

    In my 10 years, Valium has been a savior. Was prescribed PRN for my muscle spasms and tremor in left arm. But am now on a regular daily dosage.

    Xanax, Clonazepam, Lyrica, Neurontin (Gabapentin) and Flexeril have not been a good route for me.

    I understand your hesitation to continue benzo treatment, and admire your desire to get the lowest dose possible. It's like your story, is quite similar to mine.

    Today, for me, was a bad day. Had so many tasks to attend to, but I just couldn't. Makes me feel sad...like I dropped the ball.
  11. gapsych

    gapsych New Member

    Bunchy, thanks and good luck. I could not take Lyrica, either. We all react differently to medications.

    Molly B, I know the feeling you are describing, but sometimes what we can and cannot do is not in our control because of this DD, which frankly, sucks doesn't it? I hate not always being able to go places, attend events, babysit my grandkids but sometimes, we don't have a choice and that is hard to accept. We all struggle with this.

  12. Molly B

    Molly B New Member

    I know we do. I fear I'm losing my family over it.

    Totally Bites.

    Thx for your honesty and support :)
  13. Tizz

    Tizz New Member

    I, too, take klonipin and have been for almost 3 years. The dose isn't the same as at the very beginning but it is the same dose that was originally effective for my cramping. I haven't ever felt the need to increase it. My Dr., too, says I can take a little more prn and every once in a while, I do, if I'm having a bad flare -- but not often.

    I think we all react differently to medications and the ones that work smoothly for one person will be a big problem for someone else. Personally I think the important effective thing is for you and your Dr. to find a med - or a combination of meds - that works well for you, and then stick with it as long as you can.

  14. LittleBluestem

    LittleBluestem New Member

    I have not made it to the 10 year mark with Xanax. Several years ago, I had a friend that had been taking it 10 years for panic attacks. Despite the fact that she had been taking the same dose all those years, her doctor (psych or whatever) decided that 10 years meant that she was addicted. He took her off of it and the panic attacks came back. The other meds he gave her did not work and/or caused problems. Finally her g. p. decided the whole thing was ridiculous and wrote her a prescription for the appropriate amount of Xanax. I don’t remember just what the dose was, but it was moderate. She continued on it without problem for several years before I moved and we lost contact. I assume she is still taking it.

    My personal, non-medical opinion is that since nervous system up-regulation is a common symptom of ME/CFS, it is a good idea to take a regular dose of something to keep it properly regulated. Since Xanax seems to be about the only thing that you can tolerate, if I were you, I would take it in the amount needed to be effective. Given Xanax’s current reputation, I doubt that many doctors would prescribe a questionable dose. I think you would be safe taking any amount your doctor is willing to prescribe.

    I would deal with the move away from London when and if it happens. If you have stabilized on a regular dose of Xanax, your current doctor might make a recommendation that it be continued to a new doctor and cite your lack of success with other meds. How far will you be moving from London? I still drive 1.5 hours back to my former doctor because they are difficult to find in the rural area where I now live and I am concerned about the Xanax issue.
  15. Bunchy

    Bunchy New Member

    How much Valium are you on and how long have you been taking it?

    I find that if I pull back my doses for a while then start up the slightly higher doses again it stays more effective.

    Sorry you had a bad day :(


    Bunchy x
  16. Bunchy

    Bunchy New Member

    Thanks for sharing.

    My problem is I took a low dose for several years then a higher dose for several years, then reduced it back to the lower dose and don't seem to be able to cope with the low dose anymore without experiencing anxiety symptoms.

    I will pull back a little then reinstate - that has worked before - it's just a rollercoaster ride though...sigh...

    Glad the Klonopin still works for you :)

    Love Bunchy x
  17. Bunchy

    Bunchy New Member

    Hi - big hugs to you :)

    I'm doing OK-ish ( a little better in some ways and not so good in other ways) apart from this problem adjusting my meds.

    I lost your email address ages ago - sorry about that :( - if you still have mine, you can email me if you like :)

    Big gentle hugs and love from,

    Bunchy xxx
  18. Bunchy

    Bunchy New Member

    Cute name :)

    I agree with your theory about the CNS up regulation and I think that's why this class of meds is crucial to me and has been of great help to me - the key is to avoid tolerance developing and to not having to keep upping the doses and that's what I am struggling with.

    I don't take Xanax - I wish it were available in the UK as it's easier to adjust doses and use prn than Klonopin and Valium.

    Love Bunchy x