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Problems with clonazepam

Discussion in 'Sleep' started by Fredd, Dec 14, 2013.

  1. Fredd

    Fredd

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    Since I'm new at this forum it will take some effort to phrase my question in an appropriate way.
    It's not even about sleep in particular, but I need to put this post somewhere.

    I've never been formally diagnosed with fibromyalgia or chronic fatigue.

    However, I've been taking clonazepam for a long time, once a day. Originally during the day, it seemed like a mild muscle relaxant.

    Things have changed so much over the past few years ! I used to be reasonably healthy.

    For at least two years now I have experienced symptoms that bear some similarity with the conditions discussed at this board. 'benzodiazepine withdrawal', and the symptoms I''ve been experiencing while not in withdrawal (?) are in some ways not that different.

    Currently I'm taking about 2 mg a day, in the evening. That I'm taking it in the evening is a bad thing, since it has both sedating and stimulating properties. Taking it during the day doesn't work, taking it twice a day may be even worse.

    Full physical depende, and tolerance. I won't bother you with the full story, that's way too elaborate.

    For over a year, this drug has seriously disrupted my sleep. During the day, exhaustion/lack of energy and cognitive issues (mostly recent) are the major issues. Lack of ability to gain/maintain muscle, great difficulty recovering from exercise and a few more issues. Recently some depression as well.

    I seem to have developed some hypersensitivity to the drug, and I suspect I have a hypersensitized nervous system. And there is chronic exhaustion.

    I would be better of without this drug, however, saying I handle common tapers badly is an understatement. Diazepam is difficult to tolerate as well. Before all of this started I already had ideopathic insomnia.

    When I try to taper, it's 'crash and burn'. Nightly awakening for various reasons, muscle spasms, worsening of cognitive function.

    I've noted that many people here have had issues with this drug that are not quite unlike mine.

    I live in a country with rationed healthcare, I need a referral from a GP to see a specialist. While I wouldn't be inclined to trust a psychiatrist, I accepted one a few weeks ago. The man knew almost nothing about Rivotril (brand clonazepam) and dismissed it as 'withdrawing from benzos', beneath him. Referred me back to the GP. I am supposed to be pleased with his five month tapering schedule. I wouldn't like to know what would be left of me after following that, 'crash and burn'. At least with cold turkey (not looking forward to that!) you get the drug out of the system quickly.

    Given my issues, and the experiences of people on this forum with this drug: can anyone give me some information regarding personal experiences or applicable theory ?

    Ideally I do want to get off this drug and I do want to recover. There may be a contradiction between those two goals. For example, 'withdrawal' situations make things worse. However, a higher dose of clonazepam makes falling asleep harder and it causes some other issues as well.
  2. Wayne

    Wayne Senior Member

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    Hi Fredd, sorry to hear you're having such a rough go of it. Another new member just posted today for the first time and she was asking about the same situation you're dealing with. Here's a link to her thread: --- coming off clonazepam. I'll copy and paste below the same reply I posted on that thread. The key is to educate yourself very, very well before making any drastic moves. From everything I've read on benzodiazapine withdrawal, going cold turkey is NOT an option you should ever seriously consider. --- All the Best, Wayne
    ......................................................................


    I took clonzepam for approx. 8-10 years, and went through quite a lengthy withdrawal process (over a year) when I decided to try to discontinue it. I learned from researching and my own experiences that this is a VERY major step to take, and should be done very carefully and very cautiously. Haste in NOT what should be foremost in your mind. From my own (successful) experience, patience is the key. I've posted fairly extensively on my own clonazepam withdrawal experiences, with the following post covering most of it. --- Withdrawing from Clonazepam / Alpha-Stim

    A website I depended heavily upon when doing my own withdrawal is at this link (BENZODIAZEPINES: HOW THEY WORK AND HOW TO WITHDRAW). One thing they emphasize is that it may be necessary to switch to other benzodiazapines with different half lives to make the tapering easier and safer. There are other websites dedicated solely to benzodiazepine withdrawal, some of which have forums to exchange tips and experiences. It may be a good thing for you to try to find one of these forums. --- I did a search on the Phoenix Rising forum with clonazepam in the title. Here's a link to the results of that search query: --- Search Query w/ Clonazepam in Title

    It took me well over a year to totally withdraw from clonazepam. I'd guess most people can do this in less time, but it's such an individual thing, and some may need even more time. Safety (and patience) should be foremost considerations. Pushing things could result in serious setbacks.
    Last edited: Dec 14, 2013
  3. caledonia

    caledonia

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    I have experience with the benzos alprazolam (Xanax) and clonazepam. They need to be carefully tapered off of, otherwise you can get rebound anxiety. The reason is that they affect your neurotransmitters and the anxiety is your brain's way of adjusting to new levels of neurotransmitters. It takes time for your brain to adjust to changes in dose.

    The first thing I would do is get stable on clonazepam. It depletes melatonin, so ironically while it's often prescribed for sleep, it will actually mess up your sleep. I found this effect started after a month, and continued for a month after I totally got off clonazepam.

    So the first thing I would do is start taking melatonin at bedtime. 1.5mg to 3mg. It typically comes in 3mg pills.

    Clonazepam has a half life of about 8 hours. To get even dosage so you're not spending part of the day withdrawing, you should take it 3 times a day spaced about 8 hours apart. I wouldn't increase what you're already taking, just split it up into 3 doses.

    Once you get stable on that, then you can start tapering. Reduce by 10% and wait at least a week or two and see how it goes. When I tapered both alprazolam and clonazepam, I would feel some smaller rebound anxiety for several days. At the one week point I would get a big rebound. If I made it through that, then I would be ok on that dose. Then I would wait a week or so until I felt ready to tackle the next reduction. I was on .5 mg and it took me 4 months I think. I've heard of a patient of my doctor's taking 3 years to get off.

    If you're extremely sensitive then you could try a Paxil Progress forum style taper, which is reducing by 10% of the previous dose. Note that this is not the same is 10% of the original dose. It creates smaller and smaller reductions as you go along.

    You can check out the Paxil Progress forum for support on this.
    cph13 and Wayne like this.
  4. physicsstudent13

    physicsstudent13 Senior Member

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    interesting, klonopin for me has saved my life it's the most effective sleep med at 0.5-1mg/day (maybe sedative effects only at lower doses). I'm curious so people have fog and slowed thinking, brain shrinkage on klonopin, I feel much more rested and clear and normal after sleeping with klonopin and asv.
    I tend to worry a lot, maybe there's something wrong with my GABA receptor
  5. Fredd

    Fredd

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    Thanks for the responses. Some useful points were made.

    For me, clonazepam is just such a hard drug to be on. It has some paradoxical (e.g. stimulation in the evening) effects. Since it's such a hard drug to be on, I cannot fathom tapering over a year. I can be semi-stable at about 2 mg for most of the time.
    Two of my main issues: poor health (long term high chronic stress, sleep deprivation) and that often other effects, like the weather/season or sleep disruptions, can have more of an effect than dose changes.

    I guess there is the psychological factor too. I just don't see myself committing to a one year taper. Even a 6 month 'vanilla' taper (without other drugs) just seems too much.

    Then, there seems to be some kind of neurological damage. Perhaps I should say neurological/endocrine damage since there is an interaction between the brain and hormones. Recently, I tried a 0.25 mg cut. I've done that in the past, but this is much worse. When my sleep gets disrupted 'all hell breaks loose'. Perhaps excess glutamate activity, something related to acetylcholine. For me, it's more of a health issues than an 'exact dose' issue.

    It's really an epic story with which I don't want to bother anyone.

    Local docs are not of much help. That's an understatement ! Noone really seems to understand. Too much ' a benzo is a benzo'. In the past I never had any problems with the hypnotic benzodiazepines I took. Clonazepam is really an anti-epileptic. A different beast. More than once I tried getting a referral to a neurologist, but failed. In this healthcare system you need a referral from a GP. I even switched to a different GP. I saw a psychiatrist once, a complete waste of time and money.The new GP is a bit better, but in many ways many things are 'too late'. A lot of damage has been done over the past year. Mostly the kind you cannot see.

    A few questions, then.

    From experience I know that diazepam is a very different drug. Differences aside, diazepam seems to 'block' sleep even more than clonazepam and it tends to cause intestinal issues.
    Are there different drugs I could switch to ? Tranxene (suggested in one post by a certain Cheney), a different benzodiazepine ? I might need some references to get a doctor to prescribe a different drug.

    caledonia,
    I appreciate you suggestion about the melatonin. However, my experience is that melatonin only works in the early morning. Not at bedtime.
    It seems that exercise drastically hinders melatonin production and exercise makes falling asleep harder. (As a side note, I have exercise intolerance in the sense that exercise has profound systemic effects that can last a long time)
    Also, lower doses (that's relative) tend to stimulate melatonin production, at least as long as I don't exercise. Nice for falling asleep. Of course, if the dose is too low there are going to be some major issues !
    Not exercising, fragmented sleep tends to cause extremely vivid, disturbing and exhausting (late morning) dreams. Exhausting in the sense that I can feel mentally and physically drained, infrequently it's almost an anxiety attack.
    My dose has been 1.75 to 2 mg over the year. (The highest dose ever prescibed was 4 mg)
    Last night's dose of 1.5 mg seems to cause some significant cognitive issues which are indeed bothering me as I write this.

    Do you have any real sources about the way clonazepam affects melatonin ? I would love to read some.

    Btw, the half life is not 8 hours. There is a diffference between 'duration of action' (which depends on the person and therapeutic effects, like anti-anxiety or anti-epileptic ?) and (elimination) half life. The latter usually is one to three days.
    Unfortunately I cannot tolerate taking it more than once a day. Perhaps twice, both doses in the evening but that's it.

    A few more questions about some of my 'weird' issues.
    This drug tends to affect my perception of light/darkness. A weird way of saying this is that darkness can seem rather 'dark'. Sometimes 'pitch black'. To which extent this depends on the constriction of the pupil I'm not sure.
    Physical exertion seems to make this worse. (I have almost no muscle left) When I lie down on the bed, after some time darkness becomes less 'dark', I can see better.
    It's as if (guessing) the body is under constant stress which could cause this effect and some other issues, like an inability to build real muscle, visceral fat gain (but only visceral), somewhat extreme reactions to exercise (massive cortisol production, insomnia, more).

    It's as if I have a chemical imbalance. I wasn't born with one, but I now definitely seem to have that !
    Perhaps too little GABA vs. too much glutamate, some issues related to acetylcholine (one anticholinergic I tried did some good things like improving cognition, improving vision, unfortunately there were also some bad things like massive insomnia)
    I have tried Seroquel, it was somewhat sedating, made me feel cold.
    Is low dose Seroquel really just an antihistamine ? I have my doubts. I have also experience with promethazine.
    Sedation, too much, especially during the day. Both Seroquel and promethazine seem to have this effect of making darkness seem 'darker'. It's as if it's potentiating the clonazepam, or it's a different effect (stress?). Especially Promethazine is not much help with sleep, it seems as if it increases the treshold for falling asleep. Like clonazepam does.
    Less frequent, sometimes there also is a disturbance in color perception.
    Any comments ?

    One of the things that clonazepam does is that it affects glutamate decarboxylase.
    Has anyone experience with antidepressants (e.g. ssris) for withdrawal purposes or 'physical depression/stress' ?

    As a last comment, increasing the dose may create some (temporary?) stability, but it will also increase the treshold for falling asleep.
  6. physicsstudent13

    physicsstudent13 Senior Member

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    thanks for your posts. has a neurologist said anything about the glutamate, GABA issues? klonopin modulates allosterically the GABA alpha receptor, it's better for sleep than ambien for me. people say it prevents deep sleep, slow wave sleep but other sleep drugs don't seem to work at all. I wonder if I have a GABA malfunction. the warnings about klonopin are serious, I read one article from the UK about brain shrinkage in the hippocampus, but then I am really foggy without the klonopin and exhausted

    anyway it's really difficult I can't figure out why I need the klonopin to sleep and why I have sleep apnea and need the ventilator. Mack Jones told me that it's a malfunction of neurons in the brainstem, but even he couldn't cure his sleep apnea except by tracheotomy
  7. Fredd

    Fredd

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    physicsstudent13,

    Unfortunately I have not had access to a neurologist. As I stated, referrals by a GP are required.
    It seems to be an article of faith that 'withdrawing from benzodiazepines' must be done by psychiatry if a GP cannot handle it. Local sources state that the main issues when withdrawing from benzodiazepines are anxiety and insomnia.
    In other words, mental issues.

    Mine have been very physical.

    I think it tends to limit or disrupt deep sleep, perhaps depending on the dose. Years ago I could sleep 10-12 hours each night on 2 mg taken during the day. I needed more sleep, and I still need more sleep.

    Klonopin works better for you than Ambien ? Have you looked at the equivalent doses ?

    Ambien/zolpidem never worked for me. At all.
    Have you tried hypnotic benzodiazepines ?

    Do you have a link to the UK article about brain shrinkage in the hippocampus (assuming it's about the Klonopin) ?
  8. physicsstudent13

    physicsstudent13 Senior Member

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    I have a terrible sleep disorder and can't sleep without the phillips asv ventilator and klonopin helps I think by consolidating sleep and lowering central apnea occurence. I feel clearer and rested the next day after taking it with an ASV machine ventilator.
    maybe then there are other medications that might help sleep architecture, deep slow wave sleep. I also can't exhale because asthma/allergies. I don't feel I have any significant side effects from klonopin and use it as a sleeping pill
    http://en.wikipedia.org/wiki/Effects_of_long-term_benzodiazepine_use
    Last edited: Dec 16, 2013
  9. nandixon

    nandixon Senior Member

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    @Fredd
    I never used more than 0.75mg (ie, 1 1/2 0.50mg tablets) of Klonopin (clonazepam), and only at night (for sleep), but I had a difficult time stopping/tapering it until I substituted about 250mg of niacinamide for each 0.25mg of Klonopin. Apparently there's sufficient similarity in effect between the two that makes niacinamide helpful for tapering, at least for some people. I'd say it took about a month to get off it completely. (I stopped the Klonopin because it started exacerbating my fatigue, and that outweighed its helpful sleep effect.) I then subsequently tapered down the niacinamide.

    Edit: Just to mention, too, in case it's not obvious, that if you taper the Klonopin with niacinamide over a long enough period of time you may find you can also begin tapering the niacinamide even before completly eliminating the Klonopin. In other words, by the time you finish tapering 2.0mg of Klonopin, you may be taking less than 2g of niacinamide (8 x 250mg = 2g).
    Last edited: Dec 16, 2013
    Wayne likes this.
  10. Wayne

    Wayne Senior Member

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    Thanks Nandixon for posting this information; I'd never heard this before. I'm completely off of Clonazepam after tapering for over a year. I wish I had known about the niacinamide, perhaps I could have done it quicker. I'll pass this along to my brother, who may want to use this niacinamide tip at some point.
    Last edited: Dec 18, 2013
  11. physicsstudent13

    physicsstudent13 Senior Member

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    so you do get slowed thinking, memory problems, low libido from klonopin? I really need to take it because of my sleep disorder
  12. Fredd

    Fredd

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    Since I haven't ried the niacinamde I suppose I could give it a try. But it's an anxiolytic, right ?
    Generally, I haven't had much luck with supplements. Aside from infrequent use of melatonin.

    Clonazepam is such a toxic drug to me. It's so disruptive. But I guess that's to be expected from a drug that has both sedative and stimulating properties ? It's much worse now than in the beginning.

    I don't reallly believe in 'slower'. It doesn't do anything useful. Withdrawal, on the other hand ...

    Sources either suggest a direct taper of clonazepam or switching to diazepam. Isn't there a third option ?

    I'm not sure what's going on with this drug. I'm fairly sure it also disrupts endocrine function.

    At any rate, if I want to switch to a different drug it seems I will be the one who has to suggest one to my doc.
  13. physicsstudent13

    physicsstudent13 Senior Member

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    I'm really surprised that people have issues with klonopin, since it really, really helps my sleep apnea, in fact since I developed the terrible disease it's like the only thing that really helps other than asv
  14. bertiedog

    bertiedog Senior Member

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    I think problems with clonazapan might be dose related because I have never gone beyond a 1/4 of 0.5 mg tablet to help me sleep and I don't ever take it every night.

    Have never needed to up the dose and I use it mainly for 2 reasons, the first being if I just cannot get off to sleep usually because of methylation supplements and it works within an hour together with my IPod playing a relaxation tape and secondly if I wake anywhere between 3 and 4 am and feel wide awake I will take just 1/4 of a tablet. Again I will either listen to BBC World Service or listen to my IPod and relaxation tape and within an hour I will fall into a good sleep.

    The only problem I find is that I sleep too heavily and then soon get a migraine because I have slept too much! This has happened the past night, waking at 3.30 am because of low cortisol, took a tiny amount of h/c but still awake and body stirred up a bit too much so knew I needed the 1/4 Clonazapan to get back to sleep. Again it took abouty 30 minutes to fall asleep and I didn't wake till 7.50 am which for me is too much sleep and so I get the migraine.

    For me this drug has been a life saver over the past 15 years, at times because of severe anxiety at night probably due to low cortisol because it never happens in the day. I really don't know how I would have survived some of the attacks I used to get until I regulated my adrenal meds better so it doesn't really happen anymore thankfully. Just the inability to sleep well on some occasions.

    Cutting back gradually and maybe trying things like Valerian might help or a supplement like 5 HTP might also be worth a try. Also of course if there is a bad adrenal problem then you need to treat this too otherwise you are fighting a loosing battle.

    Good Luck

    Pam
  15. Fredd

    Fredd

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    Hi Pam.

    I did reasonably well on the clonazepam at first, even though it had some paradoxical ('stimulating') orioerties.

    Can you elaborate on treating an adrenal problem ? I think my adrenals are all over the place.
    It's much worse now than, say, a year ago. I'm fairly sure that production of epinephrine and norepinephrine (outisde the brain) is sadly lacking, while my cortisol production tends to be high. Way too high. And at a higher dose my body seems to produce more cortisol than at a lower dose ! That's a new 'paradoxical reaction'. I'm not sure why. Way too much sleep disruption and stress this year.
    Often too much cortisol, too often too little energy.

    At least to a great extent, it's drug related.

    I'm not in the USA, I can't have myself tested for everything under the sun. For the most part I have to depend on the GP for tests, and healthcare is 'non-interventionist'. Which includes testing.

    It is indeed odd that I can't take the clonazepam twice a day. There may be some interdose withdrawal. But if I take it twice a day, then the afternoon dose tends to be sedating, and the evening dose more stimulating. Actually I don't know what would happen right now, but I'm so messed up that I don't want to experiment with that. I never worked in the past, anyway.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    There is lots of info about Rivotril at this EU site. HTH.
  17. bertiedog

    bertiedog Senior Member

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    Hi Fredd

    Have you tried something like phosphotidylserine for the high cortisol and have you done a 24 hour adrenal stress profile (saliva) to see exactly what is going on. It will also show how your DHEA levels look. You can order it yourself from Genova Diagnostics Europe and costs around £80 I think. Without this you cannot really know what is happening with regard to the cortisol that is in your cells.

    Other herbal adaptogens might be helpful too plus calming supplements like Valerian and GABA.

    The other thing that I take to control the adrenaline is a low dose betablocker, Propananol 20 mg once or twice a day is excellent for me and will stop the heart symptoms in about 40 minutes. You should be able to get that from your GP if you explain your symptoms. Over 13 years I haven't had to raise the dose though having said that I do remember that at first 10 mg was sufficient but now it wouldn't be.

    Pam
  18. physicsstudent13

    physicsstudent13 Senior Member

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    does anyone know where to buy rivotril/klonopin for cheap?
    my sleep apnea is also partly a myoclonic seizure, my leg twitches while falling asleep called PLMD or post-limb movement disorder so maybe klonopin's antiepileptic qualities help for that. I would want to withdraw klonopin if it does cause brain damage and shrinkage?

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