Experiences with Clonazepam

[jonc]

Hi, wondering if anyone has any long-term experiences with Clonazepam (known down here as Rivotril and as Klonopin in the US) to report?

My doctor prescribed this for me to try to help with sleep, particularly waking early in the morning with chest pain and anxiety. I was a bit reluctant to get stuck into it as I'm not keen on developing a benzo addiction but it does seem to be working pretty well.

I'm on a pretty low dose - been able to get it down to 0.25mg/night. Combined with 3mg of Melatonin, it pretty much solves my sleep issues. Well, I don't feel that rested and I sometimes feel pretty groggy in the morning, but at least I'm getting 7-8 hours a night, which is a huge improvement over the 3-4 I was getting before.

Has anyone had any long term experiences with this drug? I know Cheney has recommended it for long-term use in CFS and disputed that it is habituating (http://www.prohealth.com/library/showarticle.cfm?id=3154&t=CFIDS_FM). There are lots of horror stories about benzo addiction on the internet though too.

 

[Sushi]

I've been taking clonazepam for about 3 years. It has been very helpful for me and I have had no problem lowering the dose when I felt I needed less--this kinda fits with Cheney's theory.

I started taking about 1.5 mg per day in divided doses. Now I only take .25 at night. It helped a lot with excitotoxicity, but as I have gotten better I have needed less. I know several others with similar experience.

That is my experience--getting needed sleep has really been important for me.

Sushi

 

[jenbooks]

Benzos can be very helpful. Whether you get addicted or nit depends on your physiology, I believe. I am one of the sensitive ones. I was taking 30 mg tenazepam at one point a few years ago. I got addicted and my sleep which had initially benefitted became poor and not refreshing or natural. I am down to 8 mg now. I titrated down with water titeation for two years then stopped because of so many health stresses. I estimate that if I continued titration it would be another year to get off. At about 12 mg my natural sleep patterns began to return and I was able to nap again.

I'm pretty sure that the equivalency of tenazepam to Valium is 2:1 therefore 8 mg tenazepam equals 4 of Valium while klonipin is said to be ten times stronger thus .25 mg is 2.5 of Valium. Klonipin is strong. One solution is to take it irregularly without a set pattern.

Benzos sort of hijack your feedback loop. Eventually that leads to tolerance or addiction.

 

[dannybex]

Clonazepam/Klonopin and Anemia/low white blood cell counts...

One thing that Cheney fails to mention, and that I didn't learn until after taking it for 3-4 years, is that Klonopin/Clonazepam is the ONLY benzo that can cause anemia, leukopenia, and neutropenia as "side effects".

My WBC count has always been low, and my hemoglobin/hematocrit right near the bottom. I finally crossed into over into the anemic territory last year. Probably wouldn't be able to prove it was from the clonazepam, and of course I can't even claim that, but I do think Cheney and Co should have listed these possibilities when proclaiming how "safe" the drug is, how it isn't addictive (but certainly habituating) and how it "protects the brain", and how easy it is to get off of it once you don't' need it any longer. Kind of a broad-brushed statement...?

It also makes me wonder, especially if it has the potential to lower WBC counts -- something so critical to immune function, if that is one small reason why Cheney's 'success' rate has been...well, not that great?

I since tapered slowly over to valium and have been trying to get off that ever since. Down now to about half of what I was taking a year ago...a long slow process...at least for some of us.

Melatonin knocks me out within 10 minutes...and that's just with 1 mg...

D-bex

 

[Laney]

Works for Me

I have been using Clonazepam along with Trazodone for about 12 years. This has been a good combo for me: it allows me to fall asleep and stay asleep when many other things I tried did not. I have usually used 1 mg Clonazepam and 50 mg Trazodone at bed time. I try stopping one or the other periodically, but sleep becomes more problematic with each night off either one of them until I only am getting 'twilight' sleep - no deep sleep. At first the Clonazepam caused me to be very clumsy if I got out of bed after taking it and caused me to feel a little drugged in the morning but both problems resolved in a few weeks. When I have had periods where I am doing better, I have been able to cut back to .5 mg. Drugs work differently for different people, but my experience has been very positive.

 

[Lily]

Only took it once.......

I stayed awake - and I do mean WIDE awake the entire night and the next day - so I guess it had quite the opposite effect on meAfter nights of barely any sleep at all I was sure this would be the night to finally rest. WHAT a disappointment That is extremely rare though, so I hope you have a better experience Honestly I wouldn't worry about becoming dependent on it. Many people take it for years - and so what if you took it for the rest of your life if it worked and you were able to get restorative sleep. I think that I'd just about take anything to be able to access that level of restorative sleep again. The other benefits Cheney describes would be worthwhile. However being aware that it can decrease WBC and RBC, appropriate monitoring is a given. Actually most docs probably aren't aware that is a potential side-effect. I have taken another benzo off and on for several years. On for long periods, then when I don't think I need it, I taper off without any problems. Everyone is different though. I'm well aware some do have a lot of difficulty - it's just the way it is with a lot of meds really. You never quite know how you are going to react - especially with CFS - I find the longer this goes on the less tolerant I am of any meds.

Regards,
Linda

 

[jenbooks]

Ironically I am having one of those nights where I may not sleep at all; a combination of fatigue, symptom flare, possible 'herx'' after chamber, and anxiety. But I resist a rescue dose as it's called. For me benzos at higher doses did get toxic and addictive.

Danny, all of them 'attenuate the neutrophil burst.' That means your neutrophils get sleepy and groggy too . Anyway that's not good but everything has risks and no sleep is not good for immunity either. I think if life gets more peaceful I will take up my titration again and at least get down to tiny doses. I do think they protect against excitotoxicity which can damage neurons. I also think they're more toxic to some of us than others. Back to lying here not sleeping.

 

[Frank]

I'm on Trazodon 75mg + Rivotril 1.75mg for about 2 years and it helped me. But it can't be a long term solution. I will be trying to go lower on rivo in 2010.

 

[Sing]

I'm on 3/4 of a 50 mg Trazodone=37 mg a night. No more than once a week I use Temazepam 15 mg, by itself.

The Temazepam knocks me out better and has a muscle relaxing effect which gives my bound up body some relief, but I get depressed with it, so I never use it much.

Melatonin causes instant depression. Benedryl causes bad brain fog. Don't want to go with the other stuff.

Cecelia

 

[jonc]

Wow, quite a range of responses. Thanks for the feedback everyone.

Being able to get some decent sleep recently has made a lot of difference to my situation. But I'm starting to feel quite groggy in the mornings and during the day.

I can't imagine scaling back too far on the 0.25mg of Clonazepam. Perhaps 3mg of Melatonin is too much though? You have to get it by prescription here in Australia and it comes in gel-caps that are difficult to split into lower doses. I think I'll try getting a prescription for something smaller.

 

[Lily]

Melatonin

That sounds like a good place to start, tonc.....


Good luck

Linda

 

[August59]

With that low of a dose I wouldn't worry about the addiction aspect. It is the least addicting of the benzo's. Some people dispute that, but I believe it's because it's the longest acting of the benzo's. Just means you need to taper off slower. I've read somewhere that there was evidence that it had a sertonin boosting effect, but I believe it was with doses approaching 2mg, 3x day.
If .25mg sticks with you all night and helps you in the morning then go for it. That dose will not cause any of the major side effects others were talking about

 

[Tony]

Hi Jonc,

I've taken Rivotril for several years at 500 mcg's. For me it puts me to sleep but I need Stilnox (Ambien) to keep me asleep. The combo works well for me so that I get pretty regular sleep. I may need it forever, but as I was getting only an hour or so snatches of sleep before waking, it's worth it.

I think a compounding pharmacy could make the melatonin in whatever dose you like? Good luck with it all....

 

[Wayne]

Clonazepam Experiences

I took clonazepam for several years and found it to be very helpful with sleep. After about 8 years, I began to feel it probably was not good for me to take any longer, perhaps because of some of the reasons Dannybex mentioned.

I took a year to taper off my dosage of 1 mg per night. Each slight reduction brought on withdrawal reactions. It turns out the most difficult transition for me was going completely off the last .1 mg. Took me about several weeks to get over the worst symptoms.

For the following year, I wondered if I would be able to settle into a non-clonazepam regimen. After about a year, I heard about and researched micro-current therapy, specifically a FDA approved device call alpha-stim. It was touted as able to help with things like depression, insomnia, anxiety, etc.

Anyway, it turned out to be a great fit for me. I feel I've been able to get the benefits I had come to depend on with clonazepam, but without the unpleasant side effects, such as feeling like I had a hangover each morning. I use the alpha-stim throughout my days, especially when I'm dealing with sensory overload or feeling over-stimulated.

Regards, Wayne

 

[Wayne]

Alpha-Stim 100

Wayne, I find this most interesting. Which Alpha-stim did you use? Did you have any problem learning how to use it? This is the first I've heard of Alpha-stim, and I really would like to know more about it. I would also like to know where you purchased yours--please feel free to PM me if you don't want to post.

Hi Wildaisy,

I purchased the Alpha-Stim 100 refurbished from an authorized dealer for around $550 or so. I posted fairly extensively on my Alpha-Stim experiences on another thread that Cort started entitled "Hows to turn Down the Fight/Flight Response?". On this thread, ChronicallyFatigued asked a number of questions, and we had a fairly lengthy dialogue.

If you check out that thread and would be interested in more information, or have any other questions, please let me know. I'm a big believer in this therapy, and feel it could be quite helpful to many on this board who deal with the types of neurological symptoms that are so common in people with ME/CFS.

Best Regards, Wayne

ETA I just found an old thread from my ProHealth days where I went into even more detail on my Alpha-Stim experiences. Please click here.

 

[glenp]

Ty for this thread< I missed this thread completely.

I have klonopin but havent tried it - I always check with my "virtual" friends first

Danny I had no idea of the affect on wbc. My lymohocytes are always low or below normal, although my other counts dont go below normal

I am interested in the alpha stim but have to admitt am too confused, I have seen them (or maybe similar) at health shows? One of my doctors tried a micro current device, hooked up on my ears, but to their surprise I felt nothing and they didnt try it again.

I dont trust myself in purchasing items, seems i dont know when its a gimmick or the real thing so I avoid it all!!! I get the good things mixed up with something maybe similar. I guess its my brain more affected now.

Something in my brain is preventing me from falling asleep and then being able to fully wake up --I take a zopiclone to fall asleep and then an amphetamine to be able to wake up - they really are necessary for me right now. With the zopiklone I am able to get 4+ hours sleep. I cant just get up in the morning without a pill or I get sicker and can pass out. Not sure what will help next, am waiting on the klonopin maybe til I see a different specialist - ty danny for the warning, I will be asking him about the wbc count, I dont think I will try it until then-

Ty Wayne for the infor on the devices. Are they not mostly for pain? Do they attach to your ears and use micro currents? I think the doctor tried it on me for dysautonomia, I just cant remember now for sure.

glen

 

[heapsreal]

glenp if your concerned about addiction or tolerance, use it every third night, other nights use something else thats not a benzo like antihistamine or sedating antidepressant. Like you i use zopiclone and its good to get me to sleep, most of the time i take 2 but like yourself not sleeping long enough, i have found using atarax(antihistamine) with zopiclone lengthens my sleep time. Also maybe try a low dose of doxepine with a benzo for better sleep. It has been recommended in the past my a few guru cfs docs and something i have had some success with.

 

[glenp]

TY Heapsreal

I will mention these to my gp when I see him next week. I find the antihistimine interesting. I get the best sleep ever when i take "pseudoephedrine - triprolidine" ratio cotridain syr. When I first realized this I researched it and there was an application for a patent for it to be used as a treatment for unrefreshed sleep- but I cannot see that anything further developed on it. I only take it when I have coughs and it is so nice I get a good sleep. I'm a fraidy cat when it comes to meds, my gp had to actualky talk me into taking zopiclone. I was down to 2 hours sleep in 4 days.. I have been taking the zopiclone every night for about 10 months and if it doesnt work after 3 hours I get up and take an adivan. I will ask him about the doxepine and antihistimine.

glen

 

[heapsreal]

you can buy antihistamines without a prescription and theres a few that are good for sleep, as for the stuff you take for a cough, the pseudoephedrine part can be stimulating but i think the antihistamine part triprolidine overpowers it, maybe try triprolidine by itself. Others are phenergan, doxylamine, atarax, there all cheap and no bad side effects.

cheers

 

[dipic]

I started out taking 0.25mg of Lorazepam (Ativan) two and a half years ago. Within those 2 and 1/2 years I had to gradually increase my dose by quarters and the frequency I took it the sicker I got. Eventually I got up to 2mg per night. Think I did that for 3-4 months until the tolerance rose to a point where even that wasn't enough. It scared me to go any higher.

About a month ago (maybe less), I switched over to 2mg of Clonazepam (Klonopin) nightly.

I also take 10mg of Doxepin at night (which is not so bad as dependence and tolerance are very low.) Not so good, however, is that I've been taking Ambien CR (a non-benzo class drug) @ 12.5mg each night as well for about 6 months.

Needless to say I now have a high tolerance and dependence to benzos (and a non benzo) now. Withdrawl will be hell (to say the least) some day but for now they are practically essential to my survival.

So, yeah, don't let yourself get like me. I see people talking about cutting down from 0.25mg of just Klonopin and think wow.

I'm a now bit scared about the side effects mentioned earlier in the thread that I too was unaware of, especially since my WBC's have been low from the very start, ever since I got sick.