Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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The Clonazepam / Klonopin poll

Discussion in 'General Treatment' started by ArunP, Mar 6, 2017.

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How long have you been on clonazepam?

  1. 0- 4months

    0 vote(s)
    0.0%
  2. 4-12 months

    2 vote(s)
    8.7%
  3. 1-3 years

    2 vote(s)
    8.7%
  4. 3-7 years

    1 vote(s)
    4.3%
  5. 7+ years

    7 vote(s)
    30.4%
  6. Tried it but didn't help

    3 vote(s)
    13.0%
  7. Haven't taken it

    8 vote(s)
    34.8%
  1. ArunP

    ArunP

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    Coimbatore, India
    Hey,

    I can relate a lot to Dr. Cheney's ideas about seizure threshold and where we ME patients are on that scale. For the members here who take klonopin or clonazepam I'm very interested in knowing how long you have been on it. And possibly what dosage you are on.

    I've been on it for it for about 6 months now. Started at around 1 mg and currently I am at 1.5mg once at bed. It is the only medicine that helps me now.

    Although I do have my worries about tolerance and physical dependence, nothing else helps for my excitotoxicity. So, until I find something else thst works I have to take this slow and maybe when km better try reducing my dose.

    So, any experience here would very much appreciated and helpful.

    Thanks.

    Regards,
    Arun.
     
  2. hmnr asg

    hmnr asg

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    Ativan and clonazepam both help me alot but I am so afraid of the tolerance/dependence that i take them maybe 2 times per week when things are worst to make sure im not dependent. But who am i kidding, i am kind of dependent on them.
     
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  3. geraldt52

    geraldt52 Senior Member

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    I was on Klonopin for around 3 or 4 years now 20 years ago, and I consider it the worst decision I've made in my life, and have paid for it every year since. I trusted my doctor's advice, and he trusted Dr. Cheney's idea, that Klonopin is neuro-protective in CFS, an idea that I now consider to be nonsense for which as near as I can tell Dr. Cheney had absolutely no evidence. I would really caution you about continuing on with Klonopin, and in particular in ever increasing the dose. If it begins to stop working, don't increase the dose, find a way to get off of it. If you do become dependent, getting off of it is said to be worse than cocaine or heroin. I personally went through hell, and I suspect it has ruined my sleep for the remainder of my life. You might want to visit benzos.org.uk. Of course, in the end only you can decide.
     
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  4. Shoshana

    Shoshana Northern USA

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    Hello @ArunP

    I agree with the advice to not INcrease the dose from what you are taking,

    however , what you are taking,

    it does not seem like a large or harmful dose to me.

    If what you are taking helps you,
    and you don't need to increase,

    then I would go ahead with it.

    I know several people who have found that a small dose, like yours,
    does help them, and they never need to increase it.

    And they are able to avoid other meds which have bigger worries and worse side effects.



    If you find you want some in the middle of the night,
    instead of increasing your dose, or adding more,

    I myself, would split up the dose you already are taking.
    SO,
    I would take the 1 mg at bedtime, and then the 1/2 ( .5) mg
    during the night, if you get up and want help going back for more badly needed sleep.

    If you ever do feel a bit better sometime, later on,
    and want to reduce your dose a little bit, gradually,
    you could do that too.

    Maybe some people have trouble doing that,
    and I am sorry for the people who have had trouble with it,
    but many people have not had trouble reducing it,
    other than getting back the same symptoms they had before they started it.

    I wanted to give another perspective.
    With all respect and care for those who have different opinions and different experiences.
     
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  5. Shoshana

    Shoshana Northern USA

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    I want to add, that I view it the same as with all meds,

    I suggest taking the smallest dose of this one, that helps to lower your symptoms

    to be more tolerable,
    and helps you to sleep better or function better.

    And the fewest different meds you can, to put the least demands on your organs.

    For the fewest long-term bad effects.
     
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  6. ArunP

    ArunP

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    Coimbatore, India
    @Shoshana Thanks for your reply. That's what I am aiming for. Reduce the dosage to a level where it just gets me going and not do much else. I can adjust with that.

    I've read a lot of horror stories and don't want to go down that path. But without this drug. that would be a horror story in itself. I used to feel sick the whole day. Not want to do anything. Not be able to swallow or speak properly. So, for now Clonzepam works great. So I go to plan to make the best and safest use of it.

    Again much appreciated for your input.
     
    Last edited: Mar 7, 2017
    Shoshana likes this.
  7. ArunP

    ArunP

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    Coimbatore, India
    @geraldt52 I'm sorry you had such a negative experience with clonazepam. I've read a lot of other negative experiences too. Especially regarding tolerance. I think the most important point is to not increase doses because it stops working, that's how I read a lot of people have had bad experiences. I hate to take this medicine too, knowing fully its tolerance and addictive profile. But I really don't have a choice. With unhelpful doctors and nothing coming up in the test results and nobody ready to even accept I have an issue (I live in India and ME is mostly unheard of) I'm just stuck with Clonazepam.

    I tried weaning off the drug in a rather crude attempt at a planned withdrawal. I started skipping does every other day and one time I felt I can take it and tried to push it to 3 continuous days without the drug. I just broke the next day. So I got back on it and am feeling a lot better. I wish to continue on this dose for a month or so and then slowly taper and find a dose where I can just sustain. Don't have to feel normal or anything just sustain and push time until some hope comes for us all.

    Thanks for your experiences with the drug. Really helped me make a decision. I need to continue until I'm a little bit better and try to find a dosage lower from here. Possibly 0.75mg-1mg/night.

    And yes. I do think although this drug is supposed to make us sleep deep there are some sleep cycle issues with it where some parts of the sleep cycle are disturbed.
     
    Last edited: Mar 7, 2017
    Shoshana likes this.
  8. barbc56

    barbc56 Senior Member

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    I have been on Clonazepam for 20 plus years. I'm sure that if I came off it, I would have severe withdrawal but fortunately I haven't built up a tolerance. I find that surprising. I have always feared this might happen as it did on Ativan and I was only on the Ativan for several months. I am actually on a lower dose of Clonazepam from two mg. per day to 1.5 as needed. I don't always take the full amout but it just depends on how I feel and I might need the full dosage for several weeks. As long as I don't go over the monthly number of pills per month my doctor is okay with this. There might be a few days per month when I have needed 200 mg. When the dosage was reduced, and this was about fifteen years after starting it, I only had a couple of days of mild withdrawal but I don't know if the reduction was that much of a relative drop. Clonazepam has a longer half life than ativan which I did build up a tolerance and it was hell getting off it even with tapering the dosage. I also found my memory was impaired while on it even though I wasn't on a large dosage.

    I was originally prescribed Clonazepam for RLS and it has also been quite beneficial for overstimulation which increases my FM pain.

    But if I need it I need it and it's under my doctors supervision so I have learned to keep my expectations more realistic than fearing living on the streets as a junkie.

    Of course this has been my experience so it might not apply to others. It's interesting how we all react differently. Not necessarily pleasant but nevertheless, interesting.
     
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  9. Shoshana

    Shoshana Northern USA

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    If someone has problems with their liver function (a simple blood test for that)

    or if someone drinks significantly enough to stress their liver
    (I don't know how much would be too much, for this)

    then the liver might have extra strain from taking too much clonazepam.


    But if one has regular bloodwork, yearly or so,
    which shows they have no liver issue or problem,

    and if someone does not have other addictive physical brain tendency,



    then the small doses of clonaz that we are talking about....
    don't pose a lot of worry or harm, tht is my opinion.

    Worry itself, does cause stress and harm,
    so I offer my perspective.

    But I surely do know that other people may have other experiences and knowledge,
    we are all different, and each of us makes decisions based on that.

    And it is good to hear about others experiences too.

    My good hopes for every one of you.
    Shoshana
     
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  10. geraldt52

    geraldt52 Senior Member

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    Just for what it's worth, my dosing over the 3-4 years only went from .5 mg to 2 mg. The side effects became intolerable at that dose and I declined to increase the dose again. Increasing the dose is the standard advice when side effects are encountered. Point being, don't assume that 1-2 mg is a "low dose" that can't get you into any trouble, as it most certainly can. I know not everyone has a problem with benzos, or at least hasn't had one yet. Unfortunately, when you do have a problem there is no way to push rewind and get out of it. Benzos are what put Michael Jackson in the place he was. As far as I know Cheney still contends that people with CFS don't become dependent on Klonopin, but I think that is just another thing that he simply made up, with zero evidence.
     
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  11. barbc56

    barbc56 Senior Member

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    That's a good point. I can't take the usual meds. for FM but can tolerate the clonazepam along with Tramadol while other medications such as oxycodone, etc. don't even touch the pain.
     
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  12. bertiedog

    bertiedog Senior Member

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    South East England, UK
    I am not your typical user of clonazapan because I have only ever taken a quarter of 0.5 mg tablet and only take it as needed. Have been taking it in this way for probably 20 years but I have never become addicted thankfully and only now use about 25 tablets in total each year.

    I can go many weeks without needing anything to help me sleep but sometimes out of the blue I have complete insomnia and then need to take a quarter or I will be awake until 5 am. Usually when I have to take the very small dose of clonazapan I then use a relaxation tape that is on my IPOD I will be asleep within an hour and sleep normally till around 6 am. Its been a Godsend for me throughout this illness.

    Pam
     
  13. Shoshana

    Shoshana Northern USA

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    Good point. That geraldT made, above,
    about the dose not necessarily " low." :thumbsup:

    I agree it is wrong to assume that 1-2 mg is a safe dose.


    This med is not right for everyone, even at any dose level.

    I agree.

    And especially in combo with other meds.
    Even more caution needed then.

    And just like other meds, there are many which are not good at all, for many individuals.
    And some meds which are good only for very few people.


    I myself cannot take LOTS of drugs, at any dose, even tiny doses, so I do agree.


    I myself, have never taken over a 1 mg dose of clonazepam.
    And that was rare.

    By the way, I was never told to increase the dose if I had bad side effects from it,
    or I would refuse as well. !


    I cut the pills, and take 1/4 mg ( .25 mg)
    or 1/3 of a mg,
    or max at 1/2 mg .... same as (.5) mg.

    Pharmacist told me, that this is one of the pills
    that it is fine to cut, with the very cheap pill-cutters,
    they sell at the drug stores.

    But if I (or someone else) needed 1 mg, in order to lower symptoms,
    to be able to cope and live with them,
    to be able to rest and sleep,

    and had no bad side effects observed at that dose,
    and not a drinker, and no liver issue,

    and if suffering terribly without 1 mg clonazepam, :ill::depressed:
    I personally would take that.
    And having made the decision, I would then not stress myself worrying over it.

    Lots of other people have to take lots other and more meds. ( I can't and I don't.)
    That would be better if they did not need to !
    But they do need some help with their symptoms.
    And this med helps some people, and may be better or less harmful than their other options.

    Benzo's should not be taken lightly or without research and careful decision-making.

    I agree.

    And I am very sorry that like many other drugs,
    they have taken such a terrible toll on many people. :(
    Including some people here.

    We deserve better options,
    to help the sick and suffering, to cope and to recover.

    We deserve research on things other than harmful drugs,
    that could help us more, and with less concern and possible payback.

    I suggest everyone try all the non-drug, non-med options that could possibly help them,

    I suggest people take as little as possible.
    If possible.

    Just my ideas.
    My best hope to each of you! :balloons:
     
    Last edited: Mar 7, 2017
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  14. ArunP

    ArunP

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    Coimbatore, India
    From an interview with Dr. Cheney :

    Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

    In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isn’t addressed.


    The above is something is something I completely agree with. But it might not be the case with everyone with CFS/ME. But with me I'm quite sure this is the case. I've felt it and can feel its effects very clearly. I can't tolerate medicine well at all generally. But I seem to have no problem with Clonazepam. I get no recreational effects from my current dose whatsover (1.5mg). But I agree with @geraldt52 the 2mg/day is not necessarily a small dose. I think 0.5mg or lower a day would be a low dose. But that would have zero effect on someone with a brain excitotoxicity issue. I guess everything has its risks and rewards and a time frame too.

    I do not take any other medication and I don't have a choice now but to try the Clonazepam. But experiances like @geraldt52 's do happen. Sadly, quite often. Although I agree with Dr. Cheney's theory I do think he trivializes the addiction and tolerance profile of Clonazepam. Maybe he had a high succcess rate with it in his practise that he chose to ignore those patients with whom the drug didn't work well? Just like the general medical community alienated CFS/ME patients because they just don't know what's happening and they'd rather stick with the patients where they get confirmation.

    Overall, I'm happy to have a meaningful discussion on the pros and cons of Clonazepam. Thanks to both @geraldt52 and @Shoshana for giving us both sides of the argument.

    For someone with the Wired but tired or a brain excitotoxic issue, Clonazepam will help. But it has its pitfalls too. So I guess we have to tread carefully. I hate the choices I have. But looks like I have very few now or maybe just one.

    FYI, I had 3 sessions of HBOT where the Oxygen acted like a stimulant which I assume put my brain in a state of excitotoxicity (https://en.wikipedia.org/wiki/Excitotoxicity). That was 6 months ago. And I've gone do bad from there. I don't know if I'll ever get back to pre-HBOT levels. But I just hope.

    Good luck and recovery to all. :)

    Regards,
    Arun.
     
    Last edited: Mar 8, 2017
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  15. ahmo

    ahmo Senior Member

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    @ArunP I used low-dose Klonopin for about 6 months, I think 2.5mg. It helped. But, as with most pharmaceuticals, I then started having histamine reactions and stopped. Fortunately diet, detox, and correct supps eventually eliminated my awful overactive nervous system.

    Things that helped me: hypothalamus, adrenal, and pituitary glandulars; GABA and glycine; eliminating not only gluten, but also gluten cross-reactive foods, dairy, and histamines. Eventually methylation protocol, with adequate B12, seemed to play the biggest role in calming things down, and eliminated my insomnia. Good luck.
     
    Last edited: Mar 20, 2017
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