Weaning Off The Klonopin Isn't Working

Discussion in 'Fibromyalgia Main Forum' started by Mikie, May 25, 2006.

  1. Mikie

    Mikie Moderator

    As y'all know, every now and then, I try to wean off my Klonopin to see whether I still need it. In the past, when I got down to .75 mg., the symptoms return. I've been on this dose for almost a month now and I am clenching my teeth at night and starting to feel aggitated during the day. Noise and light are starting to bother me too.

    I hate to go back up to the 1 mg. I used to take at night, but if I need it, I need it. Dr. Cheney believes the Klonopin protects the brain's neurons from premature death due to the seizure activity. If that is the case, it doesn't make sense to go off of it.

    I've been in a relapse for more than a month and my mycoplasma infection has been trying to reactivate. I had been in remission for quite a while prior to that and was hoping to be able to go off the Klonopin. Perhaps right now is just not the time to be trying this. When I started weaning down, I was feeling well.

    Just thought I'd let y'all know how this ended up. I will try again down the road but for now, I will go back to the dose which helps me.

    Love, Mikie
  2. Jane_Canuck

    Jane_Canuck New Member

    SS to hear that Mikie it sure is nice to get rid of a med when you can but if it really is helping then taking it isn't going to hurt either.

    My dam doc said when I asked that klonopin does nothing for the fms patient and asked where I heard it did help cause obviously I have nothing but rubbish sources!

    That is the same day he told me there was no such thing as pain, could have killed him with my bare hands that day.

    Do hope things settle soon for you! xoxo Brenda
  3. greatgran

    greatgran Member

    As you know I am the xanax queen and have tried lowering my dose when I feel better but always have to go back on my
    1 mg a day...I take a half during the day and the other half at night..It helps not only with sleep but so many other symptoms..In fact its the only med that I have tried that I can actually feel benefits from..SO for me I don't know why I try to cut back.. Just the reputation, of the drug, I guess..

    Sorry you have been in a relapse, hope it doesn't last long and another remission is on the way...Just when you think you have this darn cfs under control, wham...SInce you are in a relapse I am sure you need you full dose..and maybe an extra one.. Sometimes I have to up my dosage during these times..

    I am so glad you posted an update on your klonopin weaning, I was wondering how it was going..I am sure this is not the time to try to cut back..We may never be able to cut back..If it works why try...We find so little that helps and when we do I say stick with it..

    I know xanax and klonopin are different but of the same family..I may give klonopin a try one day as my doc said it was longer lasting and easier to wean off of...

    Thanks for you update,
    Prayers, greatgran
  4. MamaR

    MamaR New Member

    I am sorry to read that you are in a relapse.

    Yes, I can so relate to how well the klonopin works. My doc moved me up to 1 mg. at bedtime...but, I was cutting it in half to try to wean down. I was finding that I don't rest as well... and I grind my teeth. I also have more muscle spasms it seems. Does this happen to you? The tremors are worse at times too.

    I am waiting to see another doc because the one that ordered all of my tests thinks that I have Lupus. I hope to get into see the new doc in two weeks. Just am so sick of test after test.

    I hope that you will feel better soon.

  5. laura81655

    laura81655 New Member

    Mikie, I can't remember why you were trying to wean off Klonopin first of all.

    I was not able to totally wean off all of the Valium that I used for sleep. I had all of the same side effects as you,and my pain increased 100% so I figured that Life is too short, and I would stay on the tiny amount, 2 mg. which is equivalent to less than .05 of Klon.

    I also have to take Elavil and Neurontin but I know I would still have withdrawal symptoms if I tried to wean off the valium again even though I am taking the other meds.

    I hope you will not be too hard on yourself and just realize that your body is telling you that you do need the Klonopin for right now.

    Take care!

  6. 1sweetie

    1sweetie New Member

    I am sorry to hear that you have not been able to drop the Klonopin totally. Don't get discouraged.

    You (and others) helped me so much when I needed help with sensory overload. I had only been taken my Klonopin at night. After you and others shared your experiences, I started taking it during the day also. I did quarter my pills and take only what I have to take to SURVIVE. At times, I have dissolved it my mouth for emergencies.

    When I posted that thread, I was miserable all the time. Everything and everyone was bothering me and with me having such intense problems, I was bothering them. Your advise possibly helped save my relationship with my DH.

    I wanted you to know that I am better...definitely not well but there has been a great deal of improvement. I still have to limit my computer time and I miss being able to stay on the board as much as I could at one time which makes me lonely.

    When I saw your post, I needed to tell you how much taking the medicine helped me. I truly believe what Dr. Cheney says about the drug. AD's are toxic to me but Klonopin is making like more bearable.

    I will take it as long as my body needs it and not worry about taking it. I do believe when our body is ready, we will be able to do it.

    I look forward to the day that I can say I am or have been in remission. To have been in remission and to be sick again is discouraging.

    When my breast cancer returned, I read that the emotions can be more damaging after a recurrence (actually mine was a totally new cancer). We put so much effort into getting well that a potential setback is hard to understand mentally. We have paid our dues.

    Please keep us posted and take care of yourself. Do what you have to do to get better again.

  7. Marta608

    Marta608 Member

    Unless you have a medical reason for quitting it, I'm the Queen of Knowing You Should Stay on A Med. You might recall I got feeling so much better that I stopped (very slowly) my small bit of Celexa - and I crashed as never before.

    Even my doctor said that he saw no reason to stop taking such a small dose.

    (But I'd still like to quit....)

    Mikie, you're a sensible woman. You'll know when its right.

  8. windblade

    windblade Active Member

    Is the Klonopin helpful for the seizure activity in brain in CFS or FM or both?

  9. NyroFan

    NyroFan New Member


    Klonopin is a good drug--- a life saver for me. It has a long half life and is stored in fat cells of women more than men.

    I did a sleep study. They found seizures and the report came out (their words) " Nightime seizures controlled by Klonopin'.

    I think it is a wonder drug.

    Honey, think twice before going off of it. Doc gave it to you for a reason. I would not monkey around with the help you have been given.

  10. pawprints

    pawprints New Member

    I have known one CFIDS patient who recovered and went off Klonopin without any problems. She then relapsed and decided to go back on again.

    I know Cheney has written that once a patient no longer needs it, they will be able to get off of it.

    So I agree with the rest, do not stress over this and take the medication you need at this time. You will probably be able to reduce the dose once your remission recurs.

    Good luck.
  11. Mikie

    Mikie Moderator

    Thank you all so much for your compassion and support. I really appreciate it. This relapse started before I left for Atlanta just after Easter. I had been tired and didn't know if I could make the trip but I went and am glad I did. I got the stomach flu going around when I got home. I just never got back to feeling decent after that flu. I've been running a low-grade temperature and suspect the mycoplasmas were trying to reactivate. I wrote to Dr. Nicolson and he told me that even when the ABX treatment is done, cysts deep in the body's tissues can reactivate when we get run down. I've been back on the Doxycycline and did have one mother of a Herx. I'm continuing it for another ten days. It is time to pulse my transfer factors and I took them today and will take them tomorrow. Obviously, it isn't the ideal time to try to wean off the Klonopin but I had started before this relapse.

    Brenda, no such thing as pain? Good grief, where did this guy get his medical license? Dr. Cheney is an expert in CFIDS and he has written a wonderful paper on Klonopin which I've posted here a gazillion times. Seizure activity is one of the overlap conditions in both FMS and CFIDS. I don't blame the doc for not taking my word for the benefits of Klonopin, but he ought to respect Dr. Cheney's word. He's devoted his professional career to CFIDS. Thanks for your good wishes.

    Greatgran, thanks for your reply. I'm so glad the Xanax helps you. It, and Vallium, are both in the same family as the Klonopin and all three have been helpful for some of us with these illnesses. I think that most of us on these meds which can cause a physical dependence try to wean off of them when we are feeling better. It doesn't hurt to try and we do find out whether we are ready to wean off. Obviously, I am not ready. It's almost a relief to know that I can go back to the 1 mg. and that my symptoms will get some relief.

    Mari, I pray that you do not have Lupus. Yes, I am experiencing muscle spasms again and I'm not sleeping well and am clenching my teeth. These symptoms are getting worse. Tonight, I'm taking the full 1 mg. dose. I get muscle spasms in my feet and just under my right breast. Keep us updated on your visit with the doc. We have had many members here whose docs thought they had Lupus only to turn out not to be the case. I just sent up a little prayer.

    Thanks, Laura, I'm not beating myself up. Of course, I'm a bit disappointed but I realize that my body needs this med. It's harmful to let the seizure activity continue. I will continue to try to wean off from time to time and let my body tell me when it's time. I'm glad the Vallium is helping you.

    Sweetie, you have such a wonderful attitude. I'm so glad the Klonopin has been such a help. It really has helped so many of us to be able to lead halfway decent lives. I'm so glad I read Cheney's article and tried the Klonopin. It has saved my sanity. I pray for your health.

    Thanks, Marta, or should I say, Queen Marta :) You are right and I will continue with the Klonopin as long as I need it.

    Windblade, the seizure activity is one of the symptoms which can overlap both illnesses. I had these symptoms at a very early age, before I ever knew I was sick. In the third grade, I noticed that at certain times of the year, I could barely tolerate harsh lighting. We had an old nun who was hard of hearing and she screamed at us and made us scream back at her. It got so bad that my Mom took me out of Catholic school and let me go to public school, thank God. I was a nervous wreck.

    Fight, congratulations on quitting smoking. I'm glad my story helped. It's funny but when people smoke and want to quit, it can be the most obscure things which give them the will to go through nicotine withdrawal. Talk about a tough withdrawal but it is worth it and you should be very proud of yourself. The Klonopin is helping me and trying to wean down has shown me just how much. I may never be able to go off of it until there is a cure but if I need it, I need it.

    Everyone, thanks again for all your input. I really appreciate all of you so much. I am the one who has posted of the benefits of the Klonopin so often and I do think I should tell the whole story. I do not see this as a defeat. I see it as a test to determine whether I need the Klonopin and, obviously, I do. Thank God I have it available. God bless all of you.

    Love, Mikie

  12. Mikie

    Mikie Moderator

    Sorry, guys, I was responding to the previous posters while y'all were responding to me. Thank you both for your support. I appreciate it.

    Nyrofan, I am so glad the Klonopin is controlling your seizure activity at night. It is hard to sleep when the neurons won't shut down. Klonopin helps me get good quality sleep. I look forward to getting back on the full dose tonight.

    Shana, I also read what Cheney says about going off the Klonopin when it is no longer needed. I had thought I was in remission and decided to try to wean off. In the middle of all this, I had a relapse and am just starting to feel a bit better but am still running a low-grade fever. I'm back on the Doxycycline and TF's and tonight, I'll take the full dose of Klonopin. I really need it now.

    Thank you both so much.

    Love, Mikie
  13. 69mach1

    69mach1 New Member

    i just started that in mid april and it has made a difference..i am going on day three w/o because of screw up at pharmacy..i pray i can get it when i go to pick it up at 5 tonight...

    they said they would call when it was ready...

    but the whole seizure activity makes complete sense to me base on my past history....total high anxiety from the x-hubby telling me he thinks he wants a divorce and loves me but does not know why he feels this way....

    anyays..i was trying to work and so depressed...i finally seized up..sort of speak.. it was my nerves...

    i got to go..i am hurting right now...


  14. Mikie

    Mikie Moderator

    Good luck. The pharmacy need to get your meds for you. It's dangerous to go without Klonopin. It can cause a rebound seizure. I try to always have a little extra on hand just in case. Hope you are feeling better and get this horrible stressful situation resolved. You're in my prayers.

    Love, Mikie
  15. libra55

    libra55 New Member

    Hey, you tried and it didn't work. That's okay.

    Two weeks ago I had a Crohn's flare-up. I had to go back on Prednisone for short term (one week). Which knocked the flare right down. I felt upset, and depressed, because I had been steroid free for 7 whole months and had high hopes for myself to be non steroid dependent. Guess that was not to be. It will probably happen again. My GI doc said most Crohn's patients need steroids on and off all of their lives to control flares.

    I think when we need a certain medication, and it helps us, our body needs to have it and that's just all there is to it.

    While I was flaring I boosted my Klonopin dose to 1mg at bedtime. Normally I have been taking .5 and I sleep pretty well on that, but to counteract the prednisone I boosted my dose, so I could sleep and let my body rest and heal itself.

    The Klonopin has been a life saver for me. I had tried all of the sleeping meds. This one is a keeper. I fall asleep so easily and STAY asleep too which was the real issue for me. When I get up in the morning I don't feel hung over. I have cut down on grinding my teeth at night, and I am less anxious during the day, I don't feel panicky around lights and noises, and my family says I am more pleasant to be around. Since I am sleeping better my FM pain is greatly reduced.

    I just had a doctor's appointment last week and I asked him about it and he told me I could stay on as long as I wanted and as long as I felt it was helping me.

    Hope you feel better!

  16. lovethesun

    lovethesun New Member

    does Neurontin or effexorxr help seizure activity.(if anything would I woulg guess neurontin.I'm sorry your attempt to wean off Klonopin didn't work this time.

    I tried easing off on flexeril once thinking it didn't do much.It does help for me,without it things bunched up so hard that my pain meds couldn't help the pain. It's a preventative thing to me.I know that I'm rambling and need to quit for the day but I wanted to answer this thread.Linda
  17. PVLady

    PVLady New Member

    Based on what are saying, it sounds like this is not the time to taper the Klonopin.
    Especially if you are clenching your teeth at night and feeling more anxious during the day.

    Maybe Dr Cheny is right.
    I also use small amounts of Klonopin for anxiety, also for teeth clenching.
    It seems to work instantly.
    For now, why don't you go back on the original dose until the other issues settle down.
  18. krje01

    krje01 New Member

    I went off klonopin completely & it took about3 weeks I was also put on 5mg of Bacolfen which relaced the Klonopin.It's working well for me. I was put on Baclofen for muscle /nerve pain .It's sed for multiple sclerosis .too .Like other meds are used for other reasons
  19. kalina

    kalina New Member

    You're a brave one! It will be a long time before I try to cut back on my Klonopin again!

    I tried seeing a doctor last year who thought the Klonopin was contributing to my fatigue, and wanted to get me down to half my usual dose. Well, who knows -- I thought I'd give it a try to see what happens.

    The result: SYSTEM OVERLOAD! I couldn't function when I cut my dose by .25mg. My migraines shot through the roof. I couldn't walk through a room that had the window shades open, and could only watch TV if I peeked through my fingers. I could barely even talk. Even scarier, my heartbeat was extremely erratic on a lower dose and it felt like it would jump out of my chest.

    After a week of misery, I told the doc I couldn't go through with it. She didn't believe all the problems I was having could be that bad, and tried to convince me to continue cutting back. I'm sure she thought I was being a wimp, but I knew I needed to go back up to my normal dose.

    I would have to feel MUCH better before I try that again.

    Thanks for letting us know how it went. I hope you feel better soon, and I'm sorry the experiment didn't work for you -- maybe next time.

  20. Shannonsparkles

    Shannonsparkles New Member

    Pretty much since I've gotten here, I've thought of Klonopin as the drug "all my cool friends are taking" and I've wanted to try it too. ;)

    One doc I've talked to suspects me of having seizures, though I haven't been able to book an EEG yet to be sure of it. If I am having seizures (and I sure have trouble sleeping and even more trouble waking up) is this a good one to ask for?

    (( )) Shannon

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