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The HORRORS of Klonopin addiction

Discussion in 'Other Health News and Research' started by Dreambirdie, May 18, 2011.

  1. dannybex

    dannybex Senior Member

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    Thanks to Dreambirdie for starting this thread. :)

    I must strongly disagree with Dr. Cheney.

    With all due respect to Nielk, the information that Carol Sieverling posted 10 years ago on Cheney's behalf is in my opinion very disingenous and even possibly dangerous. Several points need addressing:

    First of all, klonopin/clonazepam doesn't address WHY our brains are overstimulated -- it just temporarily provides a bandaid that suppresses the symptoms. A huge difference.

    He says it's not addictive because there's no 'drug seeking' behavior. I say that's bull. If one's doctor threatened to stop prescribing klonopin (clonazepam), believe me, people would 'seek out' that drug in a heartbeat, especially if they'd been on it for longer than six months (with some exceptions of course). And comparing the "need" for klonopin to a necessity of taking thyroid meds is just bizarre. And finally, visit any benzo detox forum, and you'll find many folks who had to increase, or as he puts it "accelerate" their dose, in order to stop the symptoms of tolerance that can develop.

    And this paragraph, well, this is just an incredible load of (fill in the blank): "Dr. Cheney said a case might be made that Klonopin is habituating. ...However, he was cautious about even calling it habituating." I seriously don't mean to be glib, but I'd like to see him tell that to Professor Ashton, who has experience with thousands of patients tapering off these dangerous drugs.

    "Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

    This is odd, because the interview/report was done in 2001. But when asked by the National CFIDS Foundation (ncf-net) in 2008, how many patients of his had recovered, he answered, "Zero".


    And finally, what he COMPLETELY fails to mention is the fact that klonopin (clonazepam) is the ONLY benzodiazepine that can cause ANEMIA and LOW WHITE BLOOD CELL COUNT (neutropenia, leukopenia).

    http://psy.psychiatryonline.org/cgi/content/full/40/5/414

    "Thrombocytopenia has been described with clonazepam (KlonopinTM)22 and diazepam (ValiumTM)22,33 (see Table 6). Diazepam and chlordiazepoxide (LibriumTM) also can reduce platelet aggregation. There is no definitive relationship between the daily dose or total cumulative dose and the occurrence of hematologic side effects.4 Clonazepam can also cause anemia, eosinophilia, and leukopenia."

    How in the world can our immune systems function properly if the drug he says is so wonderful, so protective, is causing low white blood cell counts?

    Perhaps Dr. Cheney would like to answer this question?

    d.

    p.s. Sushi -- you're very fortunate to be able to get off the drug with relative ease.
    WoolPippi likes this.
  2. Nielk

    Nielk

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    Hi Dannybex,

    I am not trying to promote the use of Benzos. Far from it. Maybe you misunderstood my beginning of the post. I was complaining about being stuck with this dosage of Klonopin even though I have tried to reduce the dosage. I hate taking these drugs and wish I can do without them. whoever can get off and has no need for it should definitely do so.

    For some reason, Cheney, Bell and other CFS doctors seem to think that Klonopin is a good treatment for specific symptoms that we have.

    Actually the doctor who started me on it, had used it on many patients with success. He himself was suffering fro CFS and found relief by taking Klonopin. Interestingly, he was healed from CFS, he is not sure why but he thinks he grew out of it from old age. He is 82 now. Once he got over the CFS, he was able to get off the Klonopin with no problem. I know that this is just an anecdote and experience from one doctor and there are really no scientific studies on this topic, it still gives some credence to the use of Klonopin IF NEEDED and of course the smallest dose possible.
  3. dannybex

    dannybex Senior Member

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    I totally understand -- and hope you didn't think I thought you were trying to promote it. I hate taking it too. My (long winded!) point was just that it would've possibly been helpful if Dr. Cheney had mentioned the 'other' downsides when he talked about it in that original article.

    I guess so. That's certainly an interesting story. As Sushi mentioned, she's been able to take it for awhile, and get off with relatively few problems.

    If my earlier rant weren't enough however(!), there are other downsides which I forgot to mention, and that is the fact the clonazepam depletes certain nutrients. Perhaps taking some of these may help offset that depletion, but then again, some patients have a difficult time tolerating the supplements as well!

    Anyway, here's a link to the list:

    http://forums.phoenixrising.me/show...ed-as-of-Today&p=172025&viewfull=1#post172025

    Take care,

    Dan

    p.s. Just curious -- do you know how long your doctor was ill, and/or how long he took the klonopin?
  4. Live And Let Die

    Live And Let Die Senior Member

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    I just started taking Klonopin. I have been dealing with generalized anxiety for 10+ years. I wanted to try Valium because of threads like this. I explained my concern to my doctor and he said he spoke the the head director of Stanford (or someone high up), and they agree Klonopin is the best for CFS situations and anxiety in general. He rx'ed me 2mg's and directed me to take it every night before bed and come back in 6 months. (I'll note that my doctor is NOT a big fan of medicating people in general, his principal is to take everything one step at a time, and I like that) I wonder though if dosage is due to how much a person weighs. I'm 225 pounds so perhaps 2mgs for me is less than 1mg for someone weighing 100 pounds. Idk how this stuff works. I do have an addictive personality but I'm not scared to become dependent and have to taper off, suffer withdrawls ect. The hell I've been through with CFS, I'm not scared of anything at this point in regards to side effects or withdrawl symptoms. Obviously I won't take it for 2 years then stop cold turkey, that wouldn't be very smart.

    I'm going to try an cycle it with other supplements as heaps mentioned. Ha, a balanced diet of sorts.

    Now, with that said, I took 2mgs the first two nights and could barely walk I was so off balance. Tonight I took 1mg and see how I feel in the morning. If I'm too groggy, I'll drop it down again.

    I'll also add that a rockstar and an individual with cfs are on opposite ends of the spectrum and I think that comparison and argument can be completely thrown out on a logic basis.



    Danny, if I may... I'm not arguing, just putting my thoughts out there.

    "First of all, klonopin/clonazepam doesn't address WHY our brains are overstimulated -- it just temporarily provides a bandaid that suppresses the symptoms" Until the cause of CFS is discovered, isn't that every treatment we are trying? I'm pretty sure taking uber amounts of antivirals for years does something bad somewhere else in the body ect.

    "He says it's not addictive because there's no 'drug seeking' behavior. I say that's bull. If one's doctor threatened to stop prescribing klonopin (clonazepam), believe me, people would 'seek out' that drug in a heartbeat, especially if they'd been on it for longer than six months (with some exceptions of course). " Well of course they would, especially if they knew that it takes time to properly taper off the medication. The same can be said for people taking heart medication, or if you threatened to take a wheelchair away from a disabled person. Yes, Klonopin has addictive qualities but good grief it isn't meth,crack or heroin is it?

    "How in the world can our immune systems function properly if the drug he says is so wonderful, so protective, is causing low white blood cell counts?" Doctors practice medicine.

    "And finally, visit any benzo detox forum, and you'll find many folks who had to increase, or as he puts it "accelerate" their dose, in order to stop the symptoms of tolerance that can develop" I don't think people should worry so much about the worst case senarios.

    With all that said (and I'm just trying to get a conversation going, I have no one to talk to about this stuff), I wish I wasn't on ANY medication at all and was completely healthy. But I'm not and personally just doing the best I can. I do appreciate your concerns over the potential side effects specific to worsening the underlying cfs condition but what are you gonna do? Everything in life is give and take anyway. Idk, I'm just rambling. Don't take offense to anything I say, I'm a conversationalist.
  5. Dorothy

    Dorothy

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    I've been taking Klonopin since 1989, and it works very well for me, with no side effects. I take a low dose, .5 mg. Usually I just take one tablet a day, but on very sick days I take two. I have no trouble dropping back to one tablet after I feel better, and I've never increased the dosage even after 21 years.


    I seem to fit the type of patient described by Dr. Cheney - I do feel less wired, frazzled and confused when I take Klonopin, and it actually helps my memory rather than acting as a sedative. I also feel less feverish and dizzy. I'd have to say that this is my most helpful medication.


    I do understand, though, that it's not for everyone and it sure could be trouble to stop taking a larger dose after many years. I think I simply have the type of brain injury or dysfunction that responds well to this drug. Unfortunately, since I don't expect (at this time) to recover any time soon, I'm not too worried about having to stop taking it.
  6. Nielk

    Nielk

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    Hi Dan,

    I am not sure, but I would say at least 20 to 25 years. At one point, he was so ill that he was wasting away. He was like a skeleton and couldn't keep down any food. Eventually that part was restored by a chiropractor who slowly desensitized him until he was able to tolerate foods again.
    He had told me that he thinks his trigger was mold. He said that he and his wife lived in an apartment in Manhattan for a long time with carpeting in his bedroom. When they wanted to move out, they had to remove the carpeting (condo rules) and that's when they realized that the floor below the carpet was full of mold!
    Yet, his wife didn't get sick. I think this reinforces the theory that there is a genetic tendency for this illness combined with a trigger. (like mold for some people)

    It could be that the moving away from the moldy environment lead him back to health?
    I don't know.

    be well,
    Nielk
  7. Nielk

    Nielk

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    I hope you will recover soon and have the worry of stopping it. Although the dosage you are on should not cause any trouble.
  8. Nielk

    Nielk

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    Live and let die, (interesting name)

    How are you progressing with the Klonopin? Is it still too strong for you? Are you seeing any benefits yet?
    Keep us posted.

    Good luck,
    Nielk
  9. taniaaust1

    taniaaust1 Senior Member

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    I was on Klonopin (called by its other name in my country).

    It isnt just Cheney Ive read saying he's never had a one of his ME/CFS patients become addicted to it but Ive also heard of another famous ME/CFS specialist say that too (sorry right now I cant think who.. could it have been Nancy Klimas??).

    The dosage usually prescribed for ME/CFS is tiny so shouldnt cause addiction thou this drug can be addictive and often can become so when used for other illnesses due to them taking more of it.

    The dosage I was on for ME/CFS was only a quarter to a half of the lowest dosage pill per day which for me worked great. .25mg if Im remembering correctly.

    (if you are on the dosage thou in which is used to treat other things other then dosages like cheney suggests.. yeah you may have issues then...this drug in my case has been the best pharmacutical drug I found).

    I bet Stevie was taking more then a quarter to a half lowest dose tablet so that experience isnt valid for a ME/CFS dose.
  10. jenbooks

    jenbooks Guest

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    I like my temazepam and feel it is helpful, although at higher dose (30 mg) it became toxic and useless. But at a lower dose (about 9 mg) I feel it is helpful. It's not klonipin, of course.

    The horror of any withdrawal can be completely ameliorated with careful water titration. You can go down according to your own sensitivity. I titrated at 0.3 mg (a 1/3 mg) per every few weeks for 2 years. I haven't titrated further but will, if/when life stabilizes.

    We're all individual. But you don't need to be an inpatient to get off a drug. You just need to do water titration.
  11. pine108kell

    pine108kell Senior Member

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    There is also a decent chance she was washing it all down with a quart of Jack Daniels.
  12. Live And Let Die

    Live And Let Die Senior Member

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    Nielk - Live and Let Die is one of my favorite Paul Mccartney songs.

    Taking .12-.25 of Klonopin in the morning works wonders for the day. It helps prevent overstimulation AND I don't eat as much. It takes the edge off the generalized anxiety so that I can better focus on other symptom management. If I take it at night its 1mg max. For me personally, taking a little Flexirel, I think, is improving my quality of sleep. I have been dreaming almost nightly now since taking the Flexirel, something I haven't done in a long time.


    Pine108kell - lol, yes
  13. lisann

    lisann

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    "Horrors" of klonopin is the perfect title for this thread....
    I had to quit klonopin after only nine months, and the withdrawal I went through was the WORST 12 days of my life. (That was just the worst part - it was by no means over in 12 days) And that's saying ALOT - I've had ME/CFS for 20 years, severe/bedridden much of the first 5; and I've also been through opiate withdrawal - this was worse.
    I'm not even going to attempt to describe it - you can see it live on youtube if you want (not me, just various people documenting their W/D) - and at the time I was thinking (when I COULD think) - how the hell is my brain ever going to recover from this???
    Well it's been close to 2 years now, and my brain never DID recover.
    Prior to the benzo use and detox, my symptoms were primarily physical but for some minor brain fog - now my brain functions similarly to an early-stage alzheimers patient. Of course I hope this will improve somehow - but who knows. For now it continues to decline.
    Benzos work wonderfully - used occasionally.
    If you aren't on klonopin now - think very carefully before starting this 'treatment' - you are playing with fire.
    (Yes the Ashton protocol/water titration is the best way to detox off - but it's not painless, it's a LONG process, and not simple to do in a brain-fogged state. And if you're in the US, make SURE that your dr. will even prescribe long enough to either stay on indefinitely or to titrate off for 2 years - I've known people who had their Rx stopped abruptly simply because the dr. decides you're "addicted".)
    Just my story - I wouldn't tell anyone else what to do for this HORRIBLE disease, except to be very VERY careful w/ benzodiazepines!
    And of course I wish the best to those on it now!
  14. Nielk

    Nielk

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    I like that song too. I thought the words sounded familiar.
    I'm glad you are doing well so far.
    Nielk:thumbsup:
  15. jenbooks

    jenbooks Guest

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    It's because you didn't do water titration and let your body adjust exactly as it needed to over time. Anyone coming off rapidly can damage their body--usually they recover from that damage but not always.
  16. August59

    August59 Daughters High School Graduation

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    Klonopin has been the absolute BEST treatment I've used when nerve stimulation and anxiety has been a problem. I never took over 1.5 to 2 mg a day, but I have stopped 3 different times without ant problems at all. I have plenty if I need them and will not hesitate to take it again if need be. Extended periods of severe anxiety has got to be physically worse on the body than taking Klonopin.

    I hate some people have problems with it, but the truth is that it is a perfect medication for some people and doesn't cause adverse effects when withdrawn from slowly.

    I do believe the thread title is inappropriate and surprised moderaters allow it. Another thread title "The Salvation of Klonopin - The "Best CFS Medication Ever" would be just as inappropriate, but maybe someone should start it.

    Everyone is different and we know this!
  17. Live And Let Die

    Live And Let Die Senior Member

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    Well said August. And if it is true that overstimulation is rapid firing of neurons in the brain, or whatever, that can't be good. Those extended periods of severe anxiety are ruthless and if I'm in one of those states, I'm essentially useless.

    Look, I wish I didn't have to take ANY medication at all. I wish I didn't have cfs to begin with. I wish I was in the gym 5 days a week which is what I'd do if I didn't have this crap, but such is life.

    I do feel for people who have had problems with getting off the medication and/or had addiction problems with it. Will I become dependant on it? Probably. But I refuse to live life afraid of my own shadow.

    Seems like people want to harp on the fact that it's a band aid. Our bodies don't work right automatically so we have to manually do things if we want at least SOME kind of relief.

    I'm going to book a reservation for 2 at a nice restaurant for myself and my bottle of Klonopin. Nice dinner, maybe a movie, and hey, who knows where it might lead. . .
  18. Nielk

    Nielk

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    Live and let die,

    I like your style!

    Nielk
    Xandoff likes this.
  19. Dreambirdie

    Dreambirdie work in progress

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    I went through TOXIC HELL on Atavan (another of the benzos) after taking it for just 3 days for sleep. At that point I had not taken any pharma drugs since 1976... (Due to my severe MCS, I have gravitated towards using supplements and natural treatments.) I was quickly reminded how toxic these benzos can be.

    After my first night of taking the Atavan, I felt very spaced out, lethargic and drugged. After the second night, I began to lose my balance and my ability to concentrate; I felt like I was moving in slo-mo through jello, with a lobotomized brain. I skipped the next night, because I still felt sedated after night #2. After my third pill, on the fourth night, my liver swelled, I felt EXTREMELY nauseas, even more dizzy, and so sluggish I could barely move out of bed. I had an emergency acupuncture treatment that day, and according to my acupuncturist my liver "was SCREAMING," my kidneys were "struggling,"and my adrenals were "WAY down." This after just 3 days on the lowest dose of the damn benzo, which btw was made at a compounding pharmacy with no added fillers.

    After pill #3, I had had enough and was not about to take any more. But the worst was not over. For the next 3 days I had a rebound effect, where the sedation turned to an ADHD type of mania. I was now literally pacing the floor. ANother acupuncture treatment brought the edge down a little, but did not stop the PANIC attacks that followed on the next night. After the panic attacks subsided, 6 days after the last pill, came the crash, which FINALLY gave me back a semblance of my SELF again. YAY!!!!!

    What an ordeal. Oh sure, I slept longer than usual... but what a trade off.
    Drugs are made from chemicals and in my case, with my severe MCS in addition to the CFS, drugs are a toxic option that is no option at all.

    Conclusion: I'd rather have insomnia than be poisoned by benzos.
  20. Nielk

    Nielk

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    I don't blame you with this horrible history. I think we are so different from each other and how we react to medications.
    For example a few years ago, I started Xyrem for sleep. I believe many patients take it and are fine.
    It worked well for the first 5 nights. On the sixth night I had a psychotic episode here I was in an altered state of being that lasted 3 days. It was the scariest think that ever happened to me. i had to be rushed to the doctor who had to give me meds to bring me back.
    I can't tolerate any antidepressants either. I become suicidal when I take them. Yet, Klonopin so far has worked for me even though I wish I didn't need it.
    I don't want you to think, Dreambirdie, that I'm a pill pusher.

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