Going Off Clonazepam

[leela]

Please discuss your experiences with Clonazepam here, especially experiences going off it. On other threads, people have expressed widely different experiences going off it, from no trouble at all, to horrible prolonged difficulty.

I am interested in knowing the particulars of the difficulty, the dosages involved, the sense of whether the drug was "needed" or not.

My personal experience in about six months of taking a smallish dose, is that I can skip it without a problem (that I notice) but I prefer to take it, as my sleep is much less interrupted when I take it than when I don't. I don't feel "addicted" to it at all.
I recently started taking a slightly higher dose and found my sleep was tremendously better--but worry that the more I take, the harder to come off it in the long run.(I still take less than 1mg.)

However, Cheney's theory makes a lot of sense to me: that people for whom it is neurologically necessary (in terms of excitatory neurotoxicity) there is no risk of addiction, but there may be a "dependency"--precisely because it is filling a need. When that need has been satisfied through treatment for the underlying CFS issue, going off it should not be a problem.

I'd love to know peoples' experiences with this, especially what the withdrawal feelings are like; since this illness already has so much irritability, tired/wired, sicky achy stuff already, I can't tell if the days I skip it are any different from the days I take it! Especially because the days I skip it I don't sleep well...

Please pipe in with your stories

 

[ukxmrv]

I was really lucky and had had no with-drawl symptoms. This was just a months supply at (I think but cannot find the old bottle) 2mg per day. It improved my sleep, took the edge off the "information overload" symptoms and helped the brain fog in the day.

Sadly, the doctor I saw moved away and I could not get any more. Toward the end of the month I tapered off and then stopped. There were no ill-effects from stopping but I know others less lucky who suffered even after a week. Just showed how different we all are.

 

[heapsreal]

I have never used clonazepam but have used a number of other benzo's and other types of meds for sleep, one reason i swap them around alot was to avoid tolerance and the other was becoming addicted to benzos, so i would use them 3 nights a week, but its a hard decision to stop as we dont no if stopping the drug is causing side effects/withdrawals or if its cfs causing neurological/sleep problems. If u experience withdrawal problems there are other meds u could use like baclofen or neurontin. Maybe u could just use a similar system to me and use benzos 3 nights a week like mon/wed/fri and the others use a non benzo eg antihistamine or sedating antidepressant, that way u dont have to give up the great sleep u get with clonazepam. Also if u do decide to stop clonaz, it would be even easier to stop from 3 days a week as well. Plus if your going through a bad patch its good to have something on hand u know that works and gives u good sleep as sleep is one of the most important things when u crash. Lets us know how u go, i will be interested, good luck.

cheers!!!

 

[leela]

heapsreal and everyone--what are the withdrawal symptoms like? As I said, I don't appear to get them when I go off for days at a time, but I'm wondering if I can even tell with all the other lovely daily symptoms.

Do you experience symptoms that are very specific and distinct from the ME ickiness? Is it a set of sensations that you associate directly with
the benzo withdrawal? Please describe....

 

[heapsreal]

I dont think i have ever had them other then worsing insomnia but this is what i started the meds for in the first place. Some can get very agitated and anxious and sleep does get worse but like i said, try to look into an alternative thats not a benzo to help with sleep. Insomnia was one of my first symtpoms of cfs and seems to be getting worse over time, i feel that cfs may have done some sort of neurological damage and this stops me from sleeping properly and if this is the case then only meds will help. If u think u can go back to sleeping normally without meds go for it, give it a try. Does your doc have anything in place if withdrawl symptoms arise or insomnia worsens etc. Theres really only one way to know.

cheers!!!

 

[Sushi]

I get withdrawal from sleep meds like ambien, but so far have not had it with clonazepam. In our appointment with KDM last week we asked about worrying about taking too much clonazepam and he brushed it off saying nearly all his patients took it and not to worry about taking it when you need it.

I guess he and Cheney agree, and my experience fits with this.

Sushi

 

[heapsreal]

They say from any chronic use of sleep meds u will get rebound insomnia but i suppose with cfs we dont know how much of it is rebound insomnia and how much is from the cfs. I suppose if u tapered of the meds very slowly and then gave it a few weeks, sleep should be getting back to normal, but are we normal is the question. I would be interested to hear from someone who has successfully tapered off benzos who has cfs and who is back to sleeping normally and how long it took once all sleeping pills were stopped for normal sleep to return.

cheers!!!

 

[Nielk]

I have been taking Klonopin now for about three years. I take 3mg every night. Initially, it helped with my sleep and gave me a more "balanced" feeling.

Now I have to take Ambien in addition to the Klonopin in order to fall asleep.

I have tried numerous times to decrease the Klonopin in a very slow manner. Each time I have terrible side effects. I get very edgy, nervous. I start shaking. It feels like a drug addicts withdrawal symptoms from what I see on TV. I never took "recreational drugs".

Even chipping a drop from one of the pills will adversely affect my sleep that night.

At this point, I don't know if the reason I am so dependent on it is because I became addicted or if it is because my body
needs it because of my CFS. I guess there is no way really to measure that.

By the way, I have tried Cloazepam which is the generic because my insurance wouldn't pay fro the Klonopin and it didn't work for me the same way. My doctor had to write to the insurance company that I need the Klonopin and then they allowed it.

I hope Leela this helps with you search for answers.

Nielk

 

[heapsreal]

Also i have read when withdrawing from benzo's that it is easier to change to an equivilent dose of valium/diazapam as it reduces withdrawals as it has the longest of half lives out of the benzo's and taper with it, although klonopin as a long half life its not as long as valium, also might be why some have found it harder to withdraw from xanax as it has a short half life, so does ambien for that matter but it also works slightly differently to benzos too.

 

[3CFIDS@ourhouse]

I've taken half of a .5 mg tablet of Klonopin for many years now (I'm super sensitive to medications). Like Nielk, the generic does not work for me. I was afraid that I'd keep needing higher doses, but that hasn't happened. However, if I forget to take it before going to bed I will just not go to sleep or feel mostly awake all night. In the morning, it all makes sense when I find my little orange half a pill sitting on the counter .

 

[Emmanuelle]

Just talked to my resident shrink-- he said if taking a low dose, withdrawal shouldn't be a problem. Also says that for sleep, Clonazepam works well with Ambien-- as Nielk wrote above. (The clon. takes the edge off anxiety, and the Amb. makes us fall asleep. Clon. also takes a couple of hours to work-- true for you?) If someone was taking a higher dose, they might want to titrate the dose over a couple weeks. When in doubt, of course, check with your prescriber ... I've forgotten already why you are thinking of going off it... It's late. I think I'll go take my Ambien and go to bed ... Best of luck to you.

 

[Emmanuelle]

Just want to add after re-reading your original post, that 1mg. is a pretty small dose.

I wonder if, like me, you worry about "drug-dependence". For years I wouldn't take anything-- even aspirin. Natural was good, drugs were bad. (My friends were all recovering alcoholics and addicts ... ) Anyway, I'm getting over my bias-- slowly. I take Ambien to sleep (and feel a little guilty, like I SHOULD be able to do without it) and Advil as needed most days for pain. I try not to judge myself for it. I need to sleep and pain really gets to be a drag after a while ... I want to tell you, "Don't stop taking it! It works-- you need your sleep!" but maybe that's just the little Ambien addict in me ...

 

[Nielk]

Just talked to my resident shrink-- he said if taking a low dose, withdrawal shouldn't be a problem. Also says that for sleep, Clonazepam works well with Ambien-- as Nielk wrote above. (The clon. takes the edge off anxiety, and the Amb. makes us fall asleep. Clon. also takes a couple of hours to work-- true for you?) If someone was taking a higher dose, they might want to titrate the dose over a couple weeks. When in doubt, of course, check with your prescriber ... I've forgotten already why you are thinking of going off it... It's late. I think I'll go take my Ambien and go to bed ... Best of luck to you.

It is true for me. like you mentioned that I take the Klonopin 2-3 hours before sleep because it takes time to start working and the Ambien i take right before sleep.

My own personal concern is that I think that the Klonopin is robbing me of "deep wave" sleep and therefore my body
doesn't replenish Human Growth Hormone which it normally does in that deep stage. That is why I have been trying to
go down on the doze but my body is not responding well to this request of mine.

 

[August59]

I took it for 3 - 4 years with the majority of time at a dosage of .25mg in the morning and .5mg/1mg at bedtime. Bedtime dosage was in addition to Ambien as well. Clonazepam was the best medication that I have taken to date for overall symptom relief. It cut down on the brain fog, anxiety, muscle tension and with the Ambien gave me the best sleep.

I say was the best medication. My neurologist wanted me on Xyrem for awhile and she said clonazepam had to go. I was on Xyrem about 3 years ago and I was seeing a sleep specialist then he also stopped the clonazepam at bedtime, but let me take the light a.m. dose.

When I stopped the clonazepam I quit the a.m. dose, but took L-theanine in its place. Tapered the bedtime dose down to .25mg for about 2 weeks before I stopped and started the Xyrem. I did not have any problems from quiting the clonazepam except for a return of some of the brain fog, muscle tension and occasional anxiety. I think the L-theanine has helped with that though.

When I go back to doctor I'm going to ask about taking it in the daytime again and if she is ok with it then I will start it back. The generic that I was taking worked just as good as brand name for me. The a.m. dose was a little sedating at first, but that went away after a couple of weeks.

 

[heapsreal]

any sleep is better then no sleep. Someone had similar concerns about benzo's and not getting deep sleep and their doc/neurologist? said that after a few weeks the body starts getting deep sleep again on benzos, its only the first few weeks that it interrupts deep sleep, so i believe. there are a few meds like mirtazapine, baclofen, trazodone etc that are suppose to supposrt stage 4 deep sleep and ssri's and other antidepressants that supress REM sleep, so maybe after awhile the body senses the loss of certain sleep stages and corrects it, but im just guessing, crikey! im no expert just a lab rat.lol.

 

[Nielk]

any sleep is better then no sleep. Someone had similar concerns about benzo's and not getting deep sleep and their doc/neurologist? said that after a few weeks the body starts getting deep sleep again on benzos, its only the first few weeks that it interrupts deep sleep, so i believe. there are a few meds like mirtazapine, baclofen, trazodone etc that are suppose to supposrt stage 4 deep sleep and ssri's and other antidepressants that supress REM sleep, so maybe after awhile the body senses the loss of certain sleep stages and corrects it, but im just guessing, crikey! im no expert just a lab rat.lol.

The reason that I know for a fact that my deep sleep is lacking is because I got a device called a ZEO machine.
It's not a medical device. It's sold by brookstone. it's a machine that together with a wireless headband that you wear on your forehead tracks all your sleep stages for the time you've been sleeping.

Even though I am getting enough hours of sleep, My deep sleep is very short or sometimes non-existent.
That's why I have been researching the possible reason and found out that Klonopin inhibits deep sleep.
Maybe it doesn't have that side effect when you are taking a small dosage but I know that the dosage that my body seems stuck on does cause problems with deep sleep.

 

[August59]

I have had 4 sleep studies in the last 10 years and they have all came back with low or none on the Stage 3 and 4 sleep. My first one, which was before I ever got CFS, had me at only approx. 20 minutes of Stage 3 & 4 sleep. My second one was after CFS onset and Stage 3 & 4 was less than 5 minutes. My third was taken while on Xyrem and it only went up to 15 minutes of Stage 3 & 4 sleep (I was having very sporadic, but significant vertigo at this time). My last one was about a year ago and Stage 3 & 4 was at 9 minutes with a few Alpha intrusions.

This last test was the first time that I had the MSLT (Nap test) the following day. This test just looks more at the need to sleep out of pattern and at how quick one falls asleep. It is also used to diagnose narcolepsy. MSLT stands for Multiple Sleep Latency Test and I can say that I nailed a picture perfect narcolepsy pattern. On two of the naps I fell into a dream! I fell asleep in 50 seconds and was in REM sleep in 90 seconds. The other test was very close to this. This sleep problem didn't present itself until about 2 years ago and neurologist is not convinced that I have narcolepsy. She thinks the inflammation in the hippothalmus is disturbing blood flow which in turn is affecting hormones, which I can surely tell you that I am having. Narcolepsy is now considered an autoimmune disease

Clonazepam taken long term can inhibit the amount of deep sleep one gets. It is a very individual thing as it can have no effect on deep sleep, a little effect or a strong effect on deep sleep. Clonazepam can increase serotonin in some individuals as well. (this from conversations with sleep doctor and neurologist). It appears that I'm screwed when it comes to getting a good nights sleep!

 

[heapsreal]

I would be interested to see if your deep sleep improves when off clonazepam, keep us informed. Some of us dont get much deep sleep even when not on benzo's which is what happend to me when i had a sleep study, i was negative to any apneas etc. no deep sleep is common problem with cfs but if taking benzo's doesnt make u feel any better then your doing the right thing trying something else. My problem is getting any sleep at all, if i can get 8 hours sleep i feel alot better, so in my case if a benzo can give me quantity it seems to do the job. Your chasing the quality Nielk, has any other meds helped improved your deep sleep??

cheers!!!

The reason that I know for a fact that my deep sleep is lacking is because I got a device called a ZEO machine.
It's not a medical device. It's sold by brookstone. it's a machine that together with a wireless headband that you wear on your forehead tracks all your sleep stages for the time you've been sleeping.

Even though I am getting enough hours of sleep, My deep sleep is very short or sometimes non-existent.
That's why I have been researching the possible reason and found out that Klonopin inhibits deep sleep.
Maybe it doesn't have that side effect when you are taking a small dosage but I know that the dosage that my body seems stuck on does cause problems with deep sleep.

 

[Nielk]

I would be interested to see if your deep sleep improves when off clonazepam, keep us informed. Some of us dont get much deep sleep even when not on benzo's which is what happend to me when i had a sleep study, i was negative to any apneas etc. no deep sleep is common problem with cfs but if taking benzo's doesnt make u feel any better then your doing the right thing trying something else. My problem is getting any sleep at all, if i can get 8 hours sleep i feel alot better, so in my case if a benzo can give me quantity it seems to do the job. Your chasing the quality Nielk, has any other meds helped improved your deep sleep??

cheers!!!

Hi heapsreal,

Four years ago, I was put on Xyrem. I think it's one of the sleep meds that gives you real quality and deep sleep.
For the first week, It was a wonder-drug for me. I actually woke up refreshed and felt better during the day. unfortunately,
the seventh day, I developed a dangerous side effect. My husband had to rush me to the doctor's office on a sunday (he came in just for me) and he gave me an antidote. It took about three days to come back to normal. (by normal. I mean my usual normal). Since that time I have tried twice to go on it again and my body can't tolerate it.

I would recommend to others to try it. If you do not have adverse effects, it will give you the best sleep you ever had.

 

[heapsreal]

i would love to try xyrem but i dont think it will ever be approved in australia. Im finding the best medication for sleep is seroquel but cant use it all the times as it stops working like every sleep med i use but also sometimes it gives me terrible aches and pains everywhere when i wake up and throughout the day, but i think this might be when im going through a crash and already have aches and pains, seems to increase them, but if not in one of these crazy phases i sleep well, nice and deep and i wake feeling alittle groggy but feel quite good during the day from a descent nights sleep. Thats a pity the xyrem isnt for you, bugger, sounds like u were onto something.

cheers!!!