To Detox or Not?

Discussion in 'Fibromyalgia Main Forum' started by hollie9, Jun 29, 2011.

  1. hollie9

    hollie9 New Member

    After about 20 years of CFS, including some really bad initial years, I am now relatively high functioning for CFS. I can exercise and do, within limits, drive distances, go out with friends, dance, have traveled around the world (hard travel), have a good attitude most of the time, have withstood horrible stress.

    But my new doc thinks I am taking too many benzos and I don't disagree. The main thing is klonopin, which I don't know how, has inched up over the years to where I am taking 4 mg/night. I originally took it for the neurological buzz syndrome I had in my head, and it made that go away. I'm sure I will always need 1.5-2 mg for this problem.

    Now I am researching detox from klonopin and it sounds like the withdrawal brings on worse symptoms than I originally took it for. I'd love to be at 2 mg but getting there could bring bad symptoms for 2 years or so.

    I am now 62 and feel I have about 10 really fun good years to I want to spend 2 of those years in klonpin withdrawal? In the end it's all about quality of life. In klonopin withdrawal I (according to what I read) will no longer be able to have fun with friends, travel,
    be depressed, be isolated....all sorts of bad stuff.

    Forget the over the counter helpers, I've tried them all for sleep, relaxation. I'm talking hard drugs like Klonopin.

    To detox or not? Anybody who has detoxed I'd love to hear from you, or anybody in a general opinion or any opinion.

  2. Jittle

    Jittle Member

    I know this is not the same... Before my FM was dianogised a docotor i USE to see put me on zoloft for stress even though I told him I was not a stressful person: I was in pain. Finally when I ended up at a pain specialist, and after way too many tests and years of pain, she said FM and lets try cymbalta I had to first stop the zoloft. It took me a month to stop taking the zoloft, and I had side affects for several months. the worst one was an upset stomach: This was horrible. It was every day and would not stop. I am not familair with klonopin but could only imagine the side effects being the same or worse than what I went through, not to mention adding stress to you life.

    For the FM I take prescription meds, and a lot of vitamins and supplements (so bad my sister just commented that I have a portable pharmacy with me). I truely beleive you know what is best for you, your body and your FM. At 62 years old and living with FM for this long (god bless you. I am 36 and have it for about 3 years now and still having a hard time) if you think you need to stay at 4mg/night than do it. I just up'ed my pain meds so I can move and function. At first I resisted narcotics: it was an internal fight with myself daily. Once I accepted FM and what it does to me I gave in and take what I need now so I can try to do some of the things I use to.
    Be prepared to state to the doctor the reasons you want to stay at the current dose. Personally I think the more informed "we" are it always seems to go better with the docotors

  3. hollie9

    hollie9 New Member

    I have read that getting off zoloft and many other SSRIs is very difficult. I don't envy your withdrawal Jittle, but glad you are through it now (?) and that it only took months. From what I've read, the klonopin withdrawal symptoms can last for years.

    I also don't trust this doc to know the method to detox me that is detailed on the UK benzo withdrawal site, where you mix in valium because it has a longer half life.

    This is all so crazy because even though the docs and pharmacists are so fearful of prescribing Ambien, they dispense klonopin like it was candy, no questions asked. Which is part of the reason my klonopin dosage went up, no doc cautioned me about the difficulty of klonopin withdrawal. I know doctors get in trouble from the AMA drug police if they prescribe too many benzos or pain meds, so I've only got the one doc who is willing to do it. They drove my last doc out of business for prescriptions, he was a CFS/FM specialist.

    It's hard to justify all this trouble.

    Thanks for your opinions, they help.

  4. hollie9

    hollie9 New Member

    I once cut a tiny piece, probably 1/8th out of one of my klonopin tabs and my skin was crawling the next few days and I felt absolutely awful. I think if I have to feel like that for a year even, I can kiss my social life goodbye.

    This may be able to be remedied by the UK benzo procedure of mixing in valium, (, I don't know.

  5. Mikie

    Mikie Moderator

    I've been on the same dose of Klonopin for about 10 years. I had tried to wean off but quit when I had reduced it by about 25 percent. I only take 1 mg. at bedtime. I got so jumpy that I couldn't take it. I decided that being physically dependent on the Klonopin was the lesser of two evils. My present doc thinks Klonopin is a great drug for my CFIDS/ME and FMS. Without it, my brain cannot stop the slight seizure state and I cannot get into the slight coma state which is what sleep really is.

    I think anyone weaning down should have some other kind of support during the process. I would research what protocols are working for others in order to have some options in the weaning process.

    I am 67 and have accepted that I may be on the Klonopin for life.

    Praying for your success in whatever you decide to do.

    Love, Mikie
  6. hollie9

    hollie9 New Member

    I totally agree on the benefits of klonopin. It helps so much with my tinnitis, neurological buzzing, sensitivity to light and sound, probably sleep. I also plan to be on it for the rest of my life, as long as I have the DD, I can't see the sense in going completely off of it. I just wish I was on 1 or 2 mg instead of 4 mg.

    I will try to taper, hopefully my doc is not clueless or can refer me to someone who knows what they are doing and follow the UK protocol.

    He didn't want me to start tapering yet because my life has been so stressful (4 deaths including husband and mother, and 4 moves) in the last year.

    Thanks for all the input everyone.

  7. Scapper

    Scapper New Member

    Hi Hollie: I'm happy to see that you've read the UK site! Please use Prof. Ashton's method IF you choose to wean down, or off!!!!

    I'm in a withdrawal nightmare......a very long long process and it has been very difficult, to say the least, on my body (especially my nervous system!!!!).

    I don't remember how low I started but over the course of about 6 years, I wound up at 4mgs and I hit a wall w/ my insomnia. I stopped sleeping even with the Klonopin. So, I decided to wean down myself.

    I remember (2006) looking at the UK site and thinking it would take me yearssss, so I decided to wean directly from Klonopin (BIG MISTAKE). I did it slow, or so I thought and each time I would decrease, I was a MESS (CNS mess). I would wait for it to pass and then decrease again.

    I wound up coming down about 2mgs that year, I think. However, my body got STUCK in what Prof. Ashton calls "protracted withdrawal syndrome."

    My sensory overload is absolutely awful (still!!). I cannot tolerate noise AT ALL......not that I have a life w/ CFS, but now I can't even tolerate life's noises, let alone people......I need lots and lots of silence to get me through my day (very sad).

    After 2006, each year I would attempt decreasing about .5 or so and then FINALLY this year I really read the UK site and did it by switching over to Valium. Decreasing has been SO much easier w/ the Valium, however, I'm already stuck in this severe CNS overload.

    I've also hit a wall with the Valium. Everytime I try to lower down, I can't sleep at all.

    Coming off this has been a true nightmare......I wish I never went on Klonopin. Keep in mind, I wasn't getting the benefits you are from Klonopin.....pre-Klonopin I could manage my sensory issues and I did not have the anxiety I do now.

    Also keep in mind that IF I had followed the UK site, I don't think I would be where I am, so pleeeease do it by switching to Valium as suggested......if you decide to do it at all.

    I'm not trying to scare you, I just want to make sure you don't wind-up hurting your nervous system like I did.

    As they say......GO SLOW (and listen to

    I hope I helped you in some way and didn't just scare you......I wish someone had told me (although I never was one for "listening" to others mistakes :)

  8. hollie9

    hollie9 New Member

    I was hoping to hear from someone who had actually tried a detox from klonopin. I didn't know if the protracted withdrawal syndrome was bunk or not. I'm glad you wrote and confirmed that it is true. This is one of the main reasons I'm maybe not going to detox from klonopin.

    I do take other meds for sleep, doxepin (liquid) and ambien, I never did take klonopin for sleep, just for the neuro symptoms, often during the day when I first got sick. Do you have any other sleep meds? I never did think klonopin is good for sleep, but I guess any benzo helps.

    This does sound like a nightmare, terrible sensory overload, losing your social life, feeling so bad for so long. I'm so sorry for you (and me). What are you going to do, go completely off or why not stay on a lower dose? Would the protracted withdrawal syndrome go away if you restarted klonopin? As if having CFS wasn't bad enough by itself, now to have to deal with this, it is not fair.

    How much did you decrease at a time at first, a quarter, an eighth?

    One thing that puzzles me about the Ashton protocol is that both klonopin and valium have long half lifes. Valium a bit more but not much. So I was wondering if valium could really be very effective at helping one off klonopin.

    Thanks very much for your post, I really appreciate it and will probably take it to my doctor along with the Ashton protocol if he still thinks detox is easy. I've tapered a lot of meds in my time but haven't heard of anything as difficult as klonopin.

    For me, I don't want to give up the quality of life I have now. I've just come through a very stressful year of deaths and moves and am looking forward to finally beginning to feel good again. To think of the difficulty of coming off klonopin, it just doesn't sound worth it or make sense.

    It's the catching of CFS that put me in this position, you too.

  9. 3gs

    3gs New Member

    Please be very careful. I went thru klonopin withdrawl and ended up in the hospital.

    My doc had me on it and kept increasing it,which I never knew was a very bad thing. 4mgs is outrageous for this drug. She left her practice with no notice and I was thrown into a tailspin.

    I cold turkeyed,had siezures and thought I was dying. There are no words for this withdrawl. Luckly my daughter found out,printed out the UK protcol-yes using valuim. This after the hospital stay where they had no idea about withdrawing someone from benzos.

    I ended up doing it at home over a yr. You can have systems for over five yrs. sadly I am back on klonopin-only thing that helped me sleep at night,but with great caution inregards to doseage.

    wish you the best of luck
  10. hollie9

    hollie9 New Member

    So you did the withdrawal at home over a year, for all 4 mgs? Did you get the protracted withdrawal syndrome? Were you able to have fun with friends, do any of you normal activities during those 5 years?

    I don't see anything wrong in doing some klonopin for the rest of my life (unless they find a cure for CFS). What dosage are you on now?

    Thanks for your post, I will copy and take it to my doctor.

  11. Scapper

    Scapper New Member

    My advice: Don't give up your quality of life just for trying to get your dosage down. Yes, 4mgs is high, but IT'S WORKING and coming down, you may not feel as well as you do now.

    My story was a completely different scenario. Klonopin stopped working for me, so I really didn't have much choice.

    However, not weaning down using Valium was the reason my process was so, my body is over-the-top sensitive.

    By the time I listened to the Ashton taper, I was already down to .25 Klonopin, so my switch to Valium was at a 5mg level. I can tell you that every time I decreased from Klonopin over a 5 year period, I FELT IT......I went down about 1/8 or less each time, but still felt irritable and ready to snap in half. However, my decreases w/ Valium did not freak my body out.

    As I said, I do seem to be stuck at this small dose and if I decrease a "hair", I don't sleep. I'm not quite sure what I'm going to do about this.

    My scenario is different b/c I'm stuck in protracted withdrawal and the ONLY thing that could possibly get me out of this is to be off benzos 100% for well over a year (according to Ashton)......and there is no guarantee my nervous system will return to "normal" (well, in my case, pre-withdrawal).

    In answer to your question, I believe (from what I read a while back) that Valium has double the half-life of Klonopin......hence the withdrawal easier on your body. I have read from previous posts that people have a real hard time coming 100% off -- I tried to bite the bullet and deal with not sleeping, but after 3 nights, I caved......I'm rendered 100% "down" if I don't sleep.

    KEEP YOUR LIFE!!!!!!! This is a nightmare (but, my CFS is really severe, with no real life involved....this has just added a while new dimension to an already bad situation).

    My opinion (only).

    Keep me posted.......any questions, please ask......I will get back to you, it may take me a bit to cycle through symptoms to do so, but I will!!!

    GOOD LUCK......scapper

    p.s. Docs aren't educated on withdrawal from benzos for some reason. My doc said it was out of his realm......don't even get me started!!!!! IF getting me OFF the drug is out of his realm, than putting me ON should also be!!!!!!!!). Now I'm the one stuck w/ the problem for 6 years now -- insane!
  12. Waynesrhythm

    Waynesrhythm Member

    Hi Hollie,

    I was taking about 2 mg/day of Clonazepam (generic Klonopin) at my maximum (an amount that had begun to concern me). I then started seeing references to how long-term use can effect blood cell counts, which gave me another incentive to considering stopping. I believe I started my withdrawal by going down to about 1.5 mg/night (minus .5mg). I noticed some withdrawal symptoms, but my body seemed to adapt to this in a few days to a couple weeks. I think I then went down another .5 mg., so within a relatively few short weeks, I was down to 1 mg/night.

    It was after this that the more noticeable withdrawal symptoms began to appear. I reduced my dosage amounts by about .1 mg at a time after that, often taking 2-4 weeks before considering my next reduction. After about a year, I was down to about .1 mg/night. I thought I was in pretty good shape to discontinue it completely, but was caught fairly off guard by the relative intensity of the withdrawal from that last .1 mg. When it became too intense, I would take just a "dusting" (perhaps .025 - .05 mg) at a time to take a break from some of the "relative" intensity, and to not overstress my system.

    When I finally took my very last .25 mg. dose (on my birthday as sort of a celebration), I felt pretty confident I would be over my worst symptoms within a few days. Unfortunately, it took me another several weeks, with my withdrawal symptoms being as intense as any before that time. I always wondered how I could so easily go from 2 mg to 1.5, and then 1.5 to 1.0, with relative ease. But completely eliminating that last .025 was probably the hardest part of the whole process. And then when the withdrawal symptoms were virtually gone, I began to wonder if it was all in my best interest, as I experienced a lot of "agitated exhaustion" from having my neurological system always on edge.

    I heard about Alpha-Stim about a year after stopping the Clonazepam, and felt I needed to at least give it a try (either that or probably go back on Clonazepam). An Alpha-Stim session involves attaching small clips to the earlobes so that a micro-current can be delivered to the neurolgoical system. I initially did a much shorter session than recommended, and at a much lower setting as well. It turned out to be way too much for me however, and I became quite nauseous, exhuasted, and woke up the next morning with a bad hangover. Interestingly, it was a hangover similar to the clonazepam hangovers I had become accustomed to over many years (which was another reason I wanted to quit). This was actually encouraging to me, as it made me think that it may indeed have a similar effect of taking a potent benzodiazapine.

    As I lowered my settings and duration times, I eventually found some optimal settings for myself (after about 2-3 weeks of trial and error). It was a long journey for me, but I feel really grateful to have come up with an effective alternative to clonazepam (with no side effects). I feel I've totally worked through all the withdrawal aspects, and am confident that I'm not becoming dependent on the Alpha-Stim as I was on the clonazepam (I've gone for several days at a time without it).

    Anyway, that's my story. This is what worked for me. Of course, there's no guarantee it will work for others. These days, I'm always considering what else I can do to keep my system calmed down. "Earthing" seems to help a lot, as does eating a very simple diet of mostly fermented foods. Homeopathic "Calms Forte" helps consistently. Various energetic "tapping" such as EFT and the "Cortices Technique" also help at times. But it's the Alpha-Stim that has proved to be the most important and reliable for me.

    Something to consider: I know a woman who took some very heavy duty drugs for years to control her epileptic seizures. She eventually found a doctor who felt he may be able to control her seizures with Klonopin, a much milder drug than she had been taking. Turns out, Klonopin worked really well for her, and she was extremely pleased not to have to put up with the side effects of her previous drug. I would doubt that she's been overly concerned with her "dependence" on Klonopin. To her, it's been a huge blessing.

    One last item: I recently discovered "lithium orotate", an over the counter mineral supplement that is frequently much more effective at treating brain and CNS "disorders" than the prescription drug "lithium carbonate". I learned that lithium does not change brain or neurotransmitter chemistry in any manner; it helps with things like depression, anxiety, even schizophrenia because of it's ability to protect the brain from toxicity. I've been taking it for a few weeks now, and feel it's been very helpful for me. Perhaps it might be worthwhile to try lithium orotate, and then experiment with reducing your Klonopin by 1/8 tablet again. This might give you some insights as to whether this could help you reduce your Klonopin dosages.

    All the Best, Wayne
    [This Message was Edited on 07/03/2011]
  13. Waynesrhythm

    Waynesrhythm Member

    Hi again Hollie,

    I just remembered hearing about an article in the most recent edition of the Townsend Newsletter. In this article, a doctor describes receiving his first chelation treatment, and noticing in the middle of it (and afterwards) how his brain all of a sudden started working much better. I've not read the article myself, but it is another instance which suggests that protecting the brain and CNS from toxicity can probably have a wide-ranging array of benefits. Seems this could be helpful for many of us who deal with neurological agitation.

    Also: When you mention your experiences with, "tinnitis, neurological buzzing, sensitivity to light and sound"; these are all very common symptoms of Lyme Disease. I wish I had paid more attention to the possibility of my having Lyme Disease years before I finally got some more reliable testing. If you haven't been adequately tested for Lyme Disease, it may be something for you to consider. Though no Lyme test is perfect in all instances, some are more reliable than others.

    Best, Wayne
    [This Message was Edited on 07/03/2011]
  14. hollie9

    hollie9 New Member

    I'm shocked you were able to come off clonazepam (which I take rather than the non-generic) so easily. I cut just a sliver off one of my 2 mg tabs and was not able to function...felt like jumping out of my skin. You didn't get any of this? If I were you I would continue to take a small amount of clonazepam.

    Yes, the anti-seizure benefits of clonazepam are what sets it apart from other benzos and may be why it is more difficult to come off of, after 15 years of taking it, I'm sure it has rewired my brain. At least it's in a good way for CFS. I do get scared that if I try to withdraw I will get seizures although I've never had one before.

    I have no problem with clonazepam, it works for me for neuro symptoms, and my blood counts are fine. The only reason I would cut back is because a doctor objects and I can't get my dosage anymore...and, they don't know how to do a proper detox. As I said before, I have a relatively good life for a CFS person, so don't want to mess that up.

    I've been tested for Lyme and don't think it showed up, I've had this disease for so long I can't remember everything I was tested for, but certainly for Lyme.

  15. hollie9

    hollie9 New Member

    Thanks for even more info and advice, I hope I never have to take down my dosage.

    What I didn't mention before was that I have also been taking 2 tabs of Xanax (2 mg). I started taking one or two in the last few months for sleep help. I don't even know why I got a script for these, they just sat around for years and one night I couldn't sleep so took one or two. I don't have anxiety problems.

    Perhaps this is what the new doc I went to objected to, so I stopped taking them. Man did I get a surprise...I was not able to function at all, forget driving and anything else, big withdrawal symptoms. So now I'm tapering with no problems so far. I'm hoping when I go back to the doc and am off Xanax that he won't object to the clonazepam. If he wants me to taper that, time for me to doctor shop.

    I just moved to this area so am trying to find a doc familiar with CFS, I can continue to drive the 2.5 hours back to my old doc. But what happens if he retires?

    It makes me so mad that doctors don't know or care about CFS. I asked my last primary doc if she knew anything about CFS, she said no, I then asked if she wanted to learn about it, and she said no. What are we to do with doctors like this?

    I've increased my doxepin to compensate for the reduced Xanax and to help me sleep. Scrapper, doxepin is great for sleep, have you tried it?

    I've never had a clonazepam/klonopin hangover, I do get hangovers if I take too much doxepin, but it's not bad and lets me know I should take less the next night.

    I agree that I want to keep my life and do not want to change a thing with clonazepam, it's working for me.

  16. hollie9

    hollie9 New Member

    Yes, I think I've gotten good advice...don't do it! Why put myself through hell when I don't have to and am functioning pretty well on my current meds. I have down days, like you, when I stay in bed, but I think I'd be worse off trying to taper klonopin.

    I have also spent way too much money on supplements with no good results, especially in the first few years.

    Hope your flare doesn't last long, I still get them too.

  17. Scapper

    Scapper New Member

    Hi Hollie: Keep in mind that 4mgs of Klonopin is a very high dose for benzos. Adding in Xanax (another benzo) puts you waaay over the top. I'm happy to hear you're coming off the Xanax.

    All benzos have a tolerance factor......your body will get very used to whatever dose you take (easy to acclimate to "more") but difficult to reduce. Everyone's "degree" of difficulty will be different......mine was rrrreal hard. However, my body is real sick and over the top sensitive. This might not be the case for you.

    And, it is MUCH EASIER reducing using the Valium.

    On the flip side of the difficulty w/ weaning, I can understand your doctor wanting you to reduce down (I'm actually impressed with doc doesn't take time to "care" like this).

    I can understand you not wanting to go through a weaning process since it seems to be working for you. However, please be careful about not taking any "other" benzo drugs.....look up all drugs that fall into this category so you don't wind-up in a worse situation IF one day you "have to" wean down.

    Yes, I've tried doxepin in the past (put on MUCH weight in a very short period of time and stilll wasn't sleeping) insomnia is completely insane.

    I get the hangover feeling from benzo's......even at this low dose of Valium (again.....rrrreal sensitive body).

    Nice chatting w/ you :)


  18. hollie9

    hollie9 New Member

    I'm already down to 1 mg Xanax, it's so far not hard to taper off when I add it a bit more Doxepin. Yeah, I didn't take this very long at all so was shocked when I got withdrawal symptoms.

    I keep remembering your earlier posts which makes klonopin withdrawal sound like true hell even with valium. So if possible, I'm staying on my same dosage rather than lose my life.

    The doctors don't really "care" about my welfare, they are afraid to prescribe too many benzos so they don't get in trouble with the doctor drug police. This doc, as others, knows nothing about CFS and does not want to learn about it. He keep dropping the word "Syndrome" off after saying "Chronic Fatigue" I'm going to call it Myalgic Encephalitus with him from now on. And doctor shop.

    Doxepin does put weight on and slows metabolism, but for me I have to take it for sleep and I get anti depressant benefits from it too. Since my husband, mother, favorite aunt, 22 year old cat died in the last few months, I need the AD benefits. If I now tried to detox klonopin, I'd just kill myself. Also had to move 3 times and am remodeling a house majorly, so very stressful.

    I guess people with insomnia as bad as yours just get used to operating on little or no sleep.

    I'm also diagnosed now with Psoriatic Arthritis and they want to put me on Methotrexate (chemo med), and Enbrel or similar. My med problems are getting worse.

  19. Mikie

    Mikie Moderator

    I am so very sorry for all that you have been through lately. Sending up a little prayer for you. I hope if you need to decrease your dose, you can find a safe way to do it. I also encountered the buzzing and jumping out of my skin. It was so uncomfortable that I decided to just stick with the Klonopin. I think tolerance is an individual thing. As I mentioned, I've been on the same dose for more than a decade. Dr. Cheney wrote an article years ago where he talks about the damage to neurons which occurs with low GABA and the slight state of seizure which is common in PWC.

    What is keeping me from getting quality sleep these days is my BP med. I tried a bunch before finding one I could even tolerate one day. The problem is that it decreases norepinephrine in the brain and interfers with sleep waves. At first, I felt some flash anger at times and inappropriate rude thoughts that I had to bite my tongue to keep from expressing out loud :) In my family, everyone dies from massive heart attacks so it is really important for me to keep my BP in check. So, I trade in my energy for a healthy BP. The side effects of anger and ugly thoughts gets better with time, but my sleep still suffers. I just read that strokes and heart attacks usually happen in people with only moderately high BP. I wish I could exercise to get the BP down but I'm too tired. Oy! It's a downward spiral.

    Again, I pray for better things for you. You deserve it.

    Love, Mikie
  20. hollie9

    hollie9 New Member

    I hear you about sticking with the klonopin after being so uncomfortable.

    Sorry about your high bp and the meds. I have low bp and thought CFS people tended to have low bp, no? I do have high cholesteral though.

    When anybody can't sleep they get grouchy, but you think the meds bring it on too? I lash out from time to time, I've started telling some people, like my contracter, not to take it personally, and that helps. But I've been like this since before CFS, if I'm tired though, I can't control it. Lack of sleep seems to drop the barriers normally in place to censor my words.

    I don't know which is worse for heart attacks, holding in anger or not taking the meds that prevent good sleep. My husband took a lot of heart meds before he died of one, but they did not prevent sleep or make him lash out. Maybe it was the Lexapro he also took that helped.


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