Klonopin

[heapsreal]

hi kaazoom, have u tried other meds with possible similar effects like lyrica, neurontin and or baclofen, they can help with muscle twitches etc and have a calming effect on the cns as well. The effect u get from klonopin seems similar to what i have got from those drugs just mentioned, plus they helped improve sleep. Like u said the effects dont last forever but maybe rotating between a few meds with similar action can help reduce tolerance so they remain effective. The drugs mentioned are probably alot easier for docs to prescribe on a regular long term plan, maybe use the benzo's on days when something important or big is on.

cheers!!!

 

[camas]

Thanks for sharing your story and video, kaazoom. The only drugs that have really helped me are klonopin and neurontin (generic gabapentin). As heapsreal mentioned, maybe you'd find neurontin helpful? It's considered quite a safe drug. I take 100 mg at night to help with sleep and another 100mg occasionally during the day if I'm having problems with fibromyalgia pain. These are quite tiny doses, but seem to do the trick for me. As a comparison, my boyfriend takes 3,000 mg a day for neuropathy in his feet with no apparent side effects.

 

[zoe.a.m.]

Not to sideline the thread, but is anyone taking neurontin daily? I've had two docs recommend it but a third told me that it causes severe mood issues and will not help sleep as klonopin does. She was the one who wrote the script so I didn't end up filling it. She is a sleep doc too. I've heard many people complain of weight gain with it as well. Hopefully real-people experiences can clear some of this up!

kazoom, your story is quite amazing. What your story really brings to light is, if klonopin relieves this level of problems associated with ME, why isn't anyone able to backtrack the symptoms relieved to the specific problems that make up ME? Like working a math problem backwards by knowing the solution first.

ITA with the fuss made over benzo side-effects versus the "safe" drugs and without looking at the level of disability case-by-case. There really is nothing to be gained by saying some meds (or classes of meds) are okay or NOT okay. It's just too broad.

 

[camas]

Not to sideline the thread, but is anyone taking neurontin daily? I've had two docs recommend it but a third told me that it causes severe mood issues and will not help sleep as klonopin does. She was the one who wrote the script so I didn't end up filling it. She is a sleep doc too. I've heard many people complain of weight gain with it as well.

Hmmm. Does help me fall asleep, doesn't seem to affect my mood other than to give me a bit of a buzz :Retro smile:, but does seem to trigger hunger as I find myself grabbing a quick late night snack after taking it.

 

[heapsreal]

hi zoe,
i was initially on lyrica, just at night for lower leg pains that would wake me up or not let me sleep, maybe restless leg syndrome but doesnt quite fit the profile. Anyway i found lyrica helped with sleep, it has some sedative qualities but not too strong as i was able to take it through the day if i needed it and still function. It also helped with my chronic lower back pain. I did notice weight gain from it if i used it twice a day but using it at night i had know problems. So, 6 months ago i started getting the lower leg pains again and lyrica wasnt doing its job, so i switched to neurontin. It has definately helped with these leg pains, i take 600mg at night. I dont find it sedating at all, just a calming effect, it does help sleep but i do use other meds for that but can tell the difference if i dont use neurontin. Neurontin doesnt help my lower back pain which is a bugger and strange as both drugs are suppose to be related. I havent had any weight gain from neurontin or any side effects at all, it just stops this leg pain i get at night. So i have been on it now for 6 months and i have had a few episodes of the leg pain again so i think its losing its effectiveness and im looking at changing back to lyrica again. It will probably be one of those things where i change between lyrica and neurontin every 6 months or so. if u google dr jay goldstein, he was big into these types of meds helping cfs. that reminds me, i really need to get his book, which i think would be a good read.

cheers!!!

hope it helps

 

[kaazoom]

I am going to keep the higher dose of clonazepam for special occasions, assuming my body hasn't built up a perminent tolerance to the drug.

The problem with trying other drugs is my doctor will only give me Citalopram which is a SSRI. It doesn't do anything and I am going to tell him I want to come off them when I see them at the end of the month. This only my second month on them.

Like many UK doctors he seems to think M.E. is a 'functional' illness, and is caused by anxiety! I asked to try baclofen, but he wouldn't prescibe it even though he admits I have increased muscle tone in my arms and legs. I think muscle stiffness is unusual in M.E., which is one of the reasons I have doubted the diagnosis. However, I think I do fit the Canadian Criteria and it started after a illness followed by a flu jab which I foolishly had while not completely recovered.

Anyhow my doctor won't give me anything other than the SSRI. It may be time to change doctors, the problem in the UK is your notes follow you and doctors here seem to put more weight on the opinions of other doctors than they do on what their patients tell them.

It is good to know the clonazepam has such a dramatic effect on me and I will use it to have a break from my symptoms now and then. But I will now be more aware of not overdoing things because I am functioning better.

Paul

 

[leela]

Paul, thanks for posting that amazing video. It is really something to see such dramatic results. I'm so glad you found something that works!
In Dr. Cheney's statements about klonopin and ME, he seems to feel that it is not so much a dependency as it fulfills a need (which seems very clear in your video) and that withdrawal is not an issue once it is not needed any more (which sadly for most ME patients is never, since as yet there is no cure for us.)
Dr. C specifically mentions that it has a neuroprotective action--i.e. it abates the excitatory neurotoxicity by lessening the overfiring of neurons, and thereby circumvents the body's natural tendency to kill off those neurons that do overfire.

 

[Kalebleo]

I understand that this pill is very addictive and if you want to cut back on it, you need to discuss this with your Doctor. You can read up on it and it says that you can get seizures and other things when you stop it all at once. Talk to your doctor or your pharmacist to find out what is the best time to take those pills.

 

[leela]

You know, it just makes sense not to go off *any* long- term medication/substance all at once, unless it's something like an antibiotic that is deseigend for a specific period.
But particularly with things that effect the brain and brain chemistry, it's kind of common sense to titrate up, and taper off.
Anyone ever had a caffeine withdrawal headache? <shudder>

And Kalebleo, if you read more about Klonopin as a treatment for ME/CFS, it is in fact not considered addictive when you need it, though dependency--different from addiction-- can arise (let's assume that's cause you need it
There is apparently no problem tapering off it once your neuronal over-firing has been dealt with by other means (Oh Happy Day. When will that be?) The difficulties appear to arise when you either come off too quickly, or when your brain is still in need of a means to control the excitatory neurotoxicity.

 

[Sing]

Thank you so much, Paul, for "showing up" for us. I think your video is revelatory.
I am glad you have found something which helps. Dr. Cheney's article on Klonopin changed my mind about trying it, and I have found it a definite help too--

Sing

 

[dipic]

Currently been taking 2mg of clonazepam per night. Yeah... I really need to taper down and cut back. Unfortunately, I had been taking Lorazepam for 2 years prior and had built up a tolerance as I needed to increase the dosage as my neuro symptoms increased.

Klonopin (or clonazepam, as I take the generic) has been amazing for my neuro symptoms but being at such a high dose, regardless of how sick I am and how effective the drug is makes me very nervous.

 

[zoe.a.m.]

dipic, I am in the same position you are, now at 2 mg/day (really 1 mg two times in the night). I was at 1 for many years and really had no problems, other than when I tried to taper down. I got as far as .5 and didn't sleep more than a few hours (often only about 2 while feeling mostly awake with tremors, etc.) for about 4 months. I finally went back up to the 1 mg and those symptoms simply went away. Since having thyroid problems and massive personal stresses over the past several months, I managed to make my way up to 2 mg (it was taking 1.5+ most nights to control my periodic limb movement disorder, but I think that was/is affected by the amount of stress I'm under).

I too feel that at 2, I am constantly in withdrawal now or cycling in and out of things. For me, it's very hard to tell how it is affecting me, I only notice that everything feels "not okay" after about 14-16 hrs. without taking it. I do not care for that feeling at all. It is not helping me sleep better, that is for certain. It does allow me to sleep some though, so I try to remember it is having some benefit (though I really doubt any true benefit at this level).

I tried taking a Valium last wk (5mg) and was able to not take the Klonopin for over a day. I also noticed that things did not feel like they were changing so quickly. I reread Heather Ashton's material on withdrawing/titrating and feel that in the next few weeks (I have not been able to be at home and am in a time of acute stress) I will start to lessen the 2 mg and figure out the valium taper. It sounds like it's "relatively" easy to drop from 2 to 1.75 or even lower. That holds promise I think. I can say that I will not attempt titration this time unless Valium is involved. If you can work with someone who is willing to do this (and frankly, I have found most psychiatrists quite willing to give it a try), that is how I would begin. There are a few youtube videos where Dr. Ashton talks about the importance of the schedule being that of the patient's. I agree with this and agree with her that it might take 1 year or more to really climb down; but why not give it that time if you've been on it anyway?

 

[Frank]

I was almost in the same situation as you Dipic. I too was afraid to taper it down. But at the moment i got it down to 0.3mg and i feel i can stop it. I made a goal to stop before 2011. I worked my way down pro 0.5mg starting about 3-4 months ago, until i reached 0.5mg, i went down with 0.1mg. Quiting the first 0.5mg felt the worst. Symptoms did flare up again, but they got better. At the moment symptoms are present but bareable. I think IM injections of hydroxycobolamin and Magnesium oil before bedtime (that is natural occuring magnesium chloride) do the trick for me. Hope that helps. So if i can do it, i think/hope you can do it too. Best of luck!

 

[Bob]

Currently been taking 2mg of clonazepam per night. Yeah... I really need to taper down and cut back. Unfortunately, I had been taking Lorazepam for 2 years prior and had built up a tolerance as I needed to increase the dosage as my neuro symptoms increased.

Klonopin (or clonazepam, as I take the generic) has been amazing for my neuro symptoms but being at such a high dose, regardless of how sick I am and how effective the drug is makes me very nervous.

Hi dipic,
I have had experience of tapering off anti-depressants... And, in my experience, it was very easy to do as long as I did it very gradually... I've also got experience of being on clonazepam, but I've never been on it long term.

If you decide you need to lower your dose then, what I suggest might be helpful to do, is to lower your dose in extremely small increments (make it a change that you can easily manage)...
And then to give it about a week before you lower the dose again.
It would be important to wait about a week each time, before you decide to reduce the dose again. This gives your body a chance to adjust to the lowered dose each time.

It can help to make a calender for this type of thing, especially for our forgetful brains.
If you lower the dose very gradually over a long period, then you might not experience any disturbing withdrawal effects.

The way I did it for antidepressants was to half my dose every few days until I got down to a crumb, and then I took the crumb every other day, and then stopped it altogether.
But you would need to approach it differently with Clonazepam, and instead of halving the dose each time, only lower the dose very slightly.

Once you start lowering it gradually, and see that it's not difficult, then it will probably give you confidence about being able to get the dose right down to a minimum when you decide you need to.

Maybe you could try lowering it 0.125mg at a time? So if you've got 1mg tablets, then that would be an eighth of a tablet. It wouldn't be a totally accurate science, but if you've got a sharp kitchen knife, then you can just about cut a quarter of a tablet into an eighth of a tablet.

Just some thoughts, in case helpful.

 

[undcvr]

the absolute best medication for me to take for sleep is Tryptophan. Tho tech not a medication but avail only thru px in certain places. 4-5gm a nite on a empty stomach. It calms EVERYTHING. The sleep is deep and refreshing and the nxt morning has to groggy after feel. It's really amazing in what it does to me and how much it helps me. And as am added benefit it cuts my sugar cravings dwn.

 

[Freddd]

I'm very close to nailing a certain pattern of vary strong responses to various supplements (mb12, adb12, methylfolate, l-carnitine fumarate, etc) and has "tolerance withdrawal" as it is often called with benzos or at least intolerable side effects. Anxiety is oftenh present as a symptom. This appears to include many posting here on this page. There is a reasoanbly complex biochemical reason for this kind of reaction to benzos along with finding startup on some supplements to be intolerable. I believe I have identified it. I need your help with some more information to nail down the pattern. Thankyou.



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