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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Klonopin

Discussion in 'General Treatment' started by Christopher, Aug 2, 2010.

  1. Finch

    Finch Down With the Sickness

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    My experience with Klonopin has been good, but nothing as good as yours, Chris! I had read some years ago about Klonopin being useful to help with sleep in ME/CFS. At the time, Ambien was allowing me to fall asleep, but I still felt as though there was an electrical current running through my body when I went to bed at night, and the description of Klonopin helping to bring the CNS back to a more normal level sounded good to me, so I asked my doctor about it.

    Now the funny part - he asked me why I wanted to use a powerful antipsychotic drug! :confused: Yeah, I know.

    Anyhow, the Klonopin stops that electrical current feeling for me. It's been a blessing. For quite some time, and still on occasion, I can go without any Ambien and still fall asleep. If I forget the Klonopin, however, I have an awful night and sometimes don't realize why until the next morning. I don't relate this to dependence, however, because it's the same feeling I was having for many years before I used the Klonopin.

    The dosage I use is small - only .5mg - and only at bedtime. It's not perfect, but it has helped me to sleep. I've not found that I've needed to increase the dosage, either.

    Good luck to you, Chris - I hope it continues to be helpful for you! Just follow Danny's advice and be cautious - it sounds like you already are!
     
  2. BEG

    BEG Senior Member

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    I would be hard-pressed to give up any of the medications that keep me semi-functional, but if I could only keep one, it would be klonopin. It soothes the wired but tired brain, it helps put me asleep, and to some extent it eases pain. I have been on the same dosage since 1996. No tolerance issues for me.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    those of you who have used valium as well as klonopin, did u find a big difference? My docs are hesitant to prescribe klonopin but dont have any problems with valium. I do find valium at 10mg helpful for sleep though.
    Also i think theres definately something in calming the nervous system down as when i have bad brain fog neurontin can sometimes help with this, i ususally only use it at night for leg pains and only occassionally during the day.

    cheers!!!
     
  4. zoe.a.m.

    zoe.a.m. Senior Member

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    I couldn't use Valium to sleep as it just relaxed me but I couldn't actually fall asleep, but Klonopin will put me to sleep. I think it's because Klonopin is stronger than Valium. Valium also gives me a kind of "down" feeling, whereas Klonopin can act as both an upper and depressant (not sure if this is true of Valium).

    I think your doctor is probably wise and unusual to suggest Valium over Klonopin, but a benzo is a benzo. Like Dannybex said, Valium is necessary for a taper from Klonopin and its half-life is far longer causing fewer problems with withdrawal. I do use Valium to moderate the use of Klonopin when my myoclonic twitching is strong and I'm unwilling to up my Klonopin. Valium has also "rebooted" my nervous system after periods of incredible stress where I could not get my CNS to settle down any other way (this is a physiological state that, when it gets strong enough, is like an awful rewiring that responds to nothing). I find it very valuable for that and it's more in line with how benzos are supposed to be used: periodically and for a few weeks at a time.

    It's really an awful choice; I do think it helps when nothing else does, but it is, for many, like making a lifelong commitment. Again, as Dannybex and CBS stated, try not to use it daily, etc. My doctor tried to get me to take Vicodin and a few other pain relievers and I expressed concern over the addictive possibilities and she almost laughed as she said "It has far less addictive potential than the Klonopin. Nothing is as difficult to stop using as Klonopin."
     
  5. ukxmrv

    ukxmrv Senior Member

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    Heapsread,

    Valium feels totally different to me, makes me sleey, dopey, spaced out, emotionless and then without any benefical brainfog lifting effects of Kloponin. Totally different for me and not at all the same. I don't have anxiety or feel terribly stressed, sensory over load and brainfog instead.
     
  6. sensing progress

    sensing progress Senior Member

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    I usually take a Benadryl each night to help with sleep. It helps calm my mind and body, I think. Can anyone compare the effect of it to that of Klonopin? Is it similar?
     
  7. Christopher

    Christopher Senior Member

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    Well that didn't last long, did it? At least it gave valuable insight into what might be going on in my brain.

    -chris
     
  8. JamesK

    JamesK

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    There are loose similarities for some... i.e. calming, anxiolytic effects, memory difficulties at higher doses, but their method of action is entirely different. I don't have enough experience with Klonopin to give an in-depth differencial, but can say it's far less "harsh". As dosage of diphenhydramine (the active ingredient of Benadryl) is increased it leads to very rough experiences, while any anxiolytic effects stay roughly the same. Increasing Klonopin dosage on the other hand will lead to greater overall levels of relaxation.

    Diphenhydramine also has serotonin re-uptake inhibition properties, so it's closer to having the effects of an SSRI anti-depressant than a benzodiazepine.
     
  9. zoe.a.m.

    zoe.a.m. Senior Member

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    I agree with JamesK--though I've never heard of diphenhydramine being called an SSRI, even though histamine is a neurotransmitter (not sure how all of this works together...).

    Many people like myself use a combo of Benadryl and Klonopin to sleep; it often works for those who do not get help with all of the normal OTC or prescription sleep aids. Diphenhydramine is very commonly used in hospitals for a sleep aid and it's the sleepy part of things like Tylenol PM, etc.

    It's shorter acting than Klonopin and packs a bigger sleep punch. It also helps with allergies and does not have the tolerance/addiction issues that a benzo does of course.
     
  10. urbantravels

    urbantravels disjecta membra

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    It's not correct to call diphenhydramine an SSRI.

    It does inhibit serotonin reuptake. But it comes along with many other side effects that are not necessarily desirable if inhibiting serotonin reuptake is your goal.

    That's why SSRIs were developed - SELECTIVE serotonin reuptake inhibitors. They are chemically similar to diphenhydramine but don't affect other neurotransmitters the way diphenhydramine does.
     
  11. CBS

    CBS Senior Member

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    My experience with diphenhydramine has been a very mixed bag. I used to use it occasionally as a way to get a 'holiday' from Ambien. In brief, it wasn't worth it to me. This is a rough guess but about 20% of the time, the diphenhydramine would leave me completely wired and in much worse shape than I had been in without anything. The sleep loss on those nights and the subsequent disruption of my sleep/wake cycle just wasn't worth any potential benefits.
     
  12. JamesK

    JamesK

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    Yep, that's entirely true - I've edited my post accordingly.
     
  13. zoe.a.m.

    zoe.a.m. Senior Member

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    I do wish there was a financial incentive to finding out more about how diphenhydramine works since it seems like for those who do not benefit (like you describe CBS) from Benadryl, Ambien, Lunesta, etc. are beneficial, and then there is a population of people for whom the exact opposite is true (like me). I think it just points to different neurotransmitters being the key for different people though their symptoms may be the same. Seems like relevant information to the pharma companies... but what can you do?
     
  14. urbantravels

    urbantravels disjecta membra

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    I find that diphenahydramine makes me incredibly jumpy - I might *sort of* sleep, but kicking my legs/tossing and turning all night. Not exactly the most beneficial way to sleep.
     
  15. JamesK

    JamesK

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    I've read lots of usage reports on DPH at "recreational" dosages (yes, some people use it for fun, at 100mg-800mg generally) and most who have used it despise the stuff, especially those who have experienced higher doses. The downsides are generally listed as being : restless legs, memory loss, hallucinations (both auditory and visual) that one is unable to separate from reality, high body load, and a generally very "dark" atmosphere.

    There are a minority who do "like" it though, in some rare cases enough to become addicted.

    I personally have a love/hate relationship with it. The high body load is actually the main effect that reduces one of my primary symptoms - the feeling that my body isn't 'grounded'. It feels similar to, in a car, having the accelerator jammed down in first gear, causing the engine to be constantly red-lined. This means I feel anxious, edgy, panicked and physically wired all of the time, which obviously causes constant fatigue / aching and being generally burnt-out. I believe it's DPH's anti-spasmodic/anti-cholinergic property that relieves this, and the effect is pronounced. I feel like a different person, far more in control and able to stop, reflect and recharge, without the constant pressure of being physically panicked. I can look in the mirror a few hours into the experience and the way I look reflects this.

    Unfortunately the myriad of other effects at the doses required for this are just as pronounced, and not much fun at all : intense auditory hallucinations / amplification of inner-voice, visual disturbances and memory problems. A few consecutive days of using these higher doses will generally lead to days, sometimes weeks of feeling so much worse than before so as to be bedridden much of the time, with severe nausea and headaches. Strangely enough I'm able to think more clearly and rationally, with less brain fog at periods during these times, so it seems as if at least some of the effects can be quite long-lasting, and maybe even cumulative...
     
  16. taniaaust1

    taniaaust1 Senior Member

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    Klonopin is called Rivotril over here in Australia. I was on it for 2-3 mths and found it very helpful. I only was on a wee dose every night..something like a half a pill of the lowest dose you get.. ummm it may of been a smaller dose then even that (so not a large enough dose to develop any kind of tollerance risk too).. it has a natural like happy feel it gives (not a high but more like a natural glow feel), helped sleep and better still seemed to slow down my over stimulated brain (stop my racing thoughts).

    I took it due to Cheneys advice online for the CFS (to help my overstimulated central nervous system) and also thought it may help my anxiety issues, which it did. It was great. I really liked it even on the tiny dosage I was taking (as Im very drug sensitive). I felt invincable while on it (warning sign.. but it felt so good).

    Thing is in my case I have borderline personality disorder to which it is contraindicated for due to the risk of paradoxal effects in those with BPD. I had considered the drug warnings .. but due to the CFS and needing something for that, I weighed up the risks and decided to trial it anyway (I'd previously tried a lot of different things which didnt work so was at a desperate point as i was needing to be taking something).

    Unfortunately thou after going so great on it for a few mths... I then suddenly tried to suicide on it (it took away my fear of killing myself and I had a sudden impulsion to do so i just tried to), I ended up overdosing on almost a full bottle of Klonopin (3 weeks before I'd tried to overdose on melatonin and took a full bottle of that) .. and ended up having to be ambulanced to hospital. (i was mentally out of it for days... I know why this drug is used as a date rape drug.. i cant remember the time when i was apparently awake and function and talking to people, It's like it wiped my memory).

    I think i also got stupid on this and ended trying to jump off of a second floor boucany onto concrete below on this drug and my partner grabbed me and held me down, sat on my back till the police arrived to take me to hospital. (hence now after my drama filled 2-3 mth trial of that drug and three ambulance hospital trips while on it, Im not allowed to take it thou it did really help CFS anxiety and racing thoughts).

    But if you arent in the contraindicated group for it.. I do suggest anyone with CFS to try it as it was really benefical CFS wise thou it didnt enable me to function any better (i'd actually forgotten about being on it till i saw this thread). I do know of one with CFS thou who says it's the worst drug she ever tried in her life, she got scary hallicinations on it. (she can take a lot of other heavy duty drugs but not just this one).

    Im now taking Xanax at times (against my doctors wishes).. also contraindicated due tot he BPD but truely just dont know what else to do as i need to take something at times, I get severe anxiety attacks at times with racing thoughts (i used to get panic attacks at times), cant sleep due to anxiety when Im like that and it makes the CFS worst when im like that as it stresses me out (my CFS can be triggered by both physical or mental exertion). With me everything seems to be contraindicated in my case for some reason or another.
    ...........

    "Paradoxical effects for benzos
    Paradoxical reactions, such as increased seizures in epileptics,[73] aggression, violence, impulsivity, irritability and suicidal behavior sometimes occur. These reactions have been explained as consequences of disinhibition, that is loss of control over socially unacceptable behavior. Paradoxical reactions are rare in the general population, with an incidence rate below 1% and similar to placebo.[5][74] However, they occur with greater frequency in recreational abusers, individuals with borderline personality disorder, children, and patients on high-dosage regimes.[75][76] In these groups, impulse control problems are perhaps the most important risk factor for disinhibition; learning disabilities and neurological disorders are also significant risks. Most reports of disinhibition involve high doses of high-potency benzodiazepines.[74]"
     
  17. Wayne

    Wayne Senior Member

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    Klonopin / Pain Control ...

    Hi Shane, Hi All,

    This is really a rather remarkable thread. I wish many who consider CFS merely a fatigue state instead of a debilitating neurological illness would read some of the descriptions here. It could be a real eye opener for them.

    I took clonazepam (generic klonopin) for about 10 years until about three years ago when my neurological symptoms became worse. Suspecting this was the result of taking clonazepam for so long, I tapered off of it over a 1-year period (quite difficult). Unfortunately, though there were benefits to withdrawing from it, it did not halt some of the deteriorating neurological symptoms I was experiencing.

    Fortunately, I discovered micro-current therapy (alpha-stim) a couple months later, and have done fairly well with this for the past two years. However, the past few months have revealed that this is no longer giving me the help I need to give my CNS a semblance of balance.

    In the past few weeks, I've been considering trying medical marijuana (MM). I had seen a segment on ABC News' 20/20 where a woman gave it to her child who was obsessive compulsive, ADD, etc. She described his reaction to MM as "taking the edge off".

    I started a thread on this topic and got some good feedback on some of the neuro-protective qualities of MM. I also got a PM from a member who described her use of MM as helping her more than anything else she has ever tried for her CFS symptoms.

    The above outline is sort of a lead-in to what I've recently experienced that I think may tie in with this whole topic of Klonopin. And it revolves around what Shane mentioned about "Pain leads to neural excitation". I occasionally take a tylenol 3 (which has codeine in it) for chronic headache pain. Always trying to take the minimum necessary, I usually take 1/4 to 1/2 a tablet at night. When I do this, I usually sleep better, and wake up the next morning feeling a little more "grounded".

    Well, last night my headache was pretty intense, and so I took a whole tablet. The positive results were that I slept better than normal, but woke up this morning feeling way more grounded than I have in a long time. Which made me wonder whether the neuro-excitotoxicity I experience is in part due to the chronic pain syndromes in my body.

    So as of this morning, I'm shifting my attention away from MM for the moment, and intend to explore the pain/excitotoxicity connection further. Thanks Shane for your tip regarding this. Also, I thought your entire post was quite a remarkable description of your experiences and how they may be insightful to others trying to find good solutions for themselves.

    Chris, congratulations on the good results you're experiencing. I think there's some excellent information on this thread that may very well my allow you to continue to receive the same benefits without the downfalls that are often associated with regular Klonopin use. Less than regular usage (if possible) may be the key for some.

    Best Regards, Wayne
     
  18. hensue

    hensue Senior Member

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    Wayne,
    Can you tell me how your long term use of klonopin made your neurological symptoms worse? I have used it long term and I know all drugs have side effects. What happened?
     
  19. oceanblue

    oceanblue Senior Member

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    Klonopin is known by it's generic name Clonazepam in the UK, and very good it is too. My first experience was with valium (diazepam,) years ago when I was very severely affected. Over and above the ability to relax me I noticed it switched me instantly from a 'bad' day to a 'good' one. (Relaxation by other means relaxed me, but didn't have the magical ability to switch me from bad to good day mode). All my symptoms improved dramatically.

    I've found that the problem with all Benzos is tolerance, or a kind of kickback where they make me feel more anxious after a few hours so I have to use them very sparingly. But I would too love to know why they work so well.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i woke yesterday morning with some slight brain fog which got worse as the day went on. Normally i use 10mg of valium for sleep but yesterday afternoon took 5mg for the brain fog and within a half hour felt alot better. I had similar effects with neurontin but not as good. Like mentioned earlier, tolerence could end up being an issue so will use this trick sparingly, maybe 2.5mg dose. Yes i think our nervous system takes a hit from some infection of some type making us tired but wired.
     

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