To take klonopin or not (tolerance and dependency).

Information about how to manage or reduce the severity of BFS symptoms

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To take klonopin or not (tolerance and dependency).

Postby ag2002 on February 13th, 2013, 3:47 pm

Hey all,

I have been on 1 mg of klonopin for about 1 month for my symptoms. I never get the sensory symptoms anymore. The twitching is barely there. It still does bother me though. This is not the only thing that I am doing to improve my symptoms however. I juice everyday and take probiotics, digestive enzymes, B12 sublingual, Vit. D3, ginger, and am on a paleo diet. Anyways, all of these things has made me healthier, however I believe the klonopin has played a huge role in reducing my symptoms. At my followup appointment this week with my neuro I asked him if he thought it might be a good idea if I combined a different antiseizure med and lowered the klonopin in order to get complete relief. He did not like the idea. He stated that he has had patients with BFS (or as he calls it neuromyotonia) that have tried multiple meds before finding one that helped them. He said klonopin is usually the most effective for his patients with my symptoms. So, he told me I could increase my dose up to 1.5mg of klonopin per day. So, I am began 1.25 mg yesterday. We will see if I get any more relief with this. Initially I was scared to take klonopin because everything you read on the internet about it from patients seems to be bad. However, most people come to the internet to complain about side effects of the medicine they are taking or had withdrawl symptoms from. If you are pleased with a medicine you are taking you are problably less likely to vocalize that on the internet. My major concerns about klonopin are that it may cause dependency or I may become tolerant and need more in the future. However, my doctor stated that once I get to a certain theraputic level that I probably will not have to increase the dose anymore. He stated that for what I am using it for (fasiculations and parasthesias) that the tolerance issues are not something to worry about. I was also told this by 2 other physicians. I will still be cautious about the medication and skeptical of doctors, but if 3 of them say tolerance shouldn't be an issue then I would think they know what they are talking about. If anyone is thinking about taking klonopin but nervous about tolerance issues as it relates to fasiculations and parathesias I just wanted to let y'all know that it might be over hyped on the internet. However, I am not advocating that you just pop a pill and not concentrate on overall health. Medications should be used as part of an overall plan to relieve symptoms and become as healthy as you can by combining them will healthy lifestyle choices (diet, exercise, etc.).
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Re: To take klonopin or not (tolerance and dependency).

Postby aztwitchy on February 13th, 2013, 4:06 pm

i took it for a month...helped tremendously for anxiety and sleep. I credit it for getting me through my lowest point of the BFS battle so far. tolerance is a real thing with it ... also its not one of those meds to quit cold turkey. you will need to slowly taper off of it. My neuro says its a solid choice for short term but not a long term medication (years and years)

that said the first time you ever feel you are abusing it... deviating from prescription dosage....that would be the warning sign you need to listen for and that is the point of issues.

just my 2 cents...
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Re: To take klonopin or not (tolerance and dependency).

Postby ag2002 on February 15th, 2013, 12:07 pm

It is interesting that doctors differ so much to what degree klonopin can cause tolerance and dependency. I guess it depends on the individuals metabolism. My psychiatrist wanted to started me on 2 mg and I told him no due to my concerns of tolerance and dependency. By the way, I did not have any psychiatric issues until I began having all these weird symptoms. I think we need to take everything that our doctors tell us with a grain of salt. My psychiatrist, neurologist, and the spinal neurosurgeon I was seeing all seem to dismiss a lot of the horror stories you see on the internet. So, I figured they could not all be wrong. Especially with the lower doses we are taking. The maximum dose for seizures is 20 mg/day http://www.drugs.com/dosage/clonazepam.html. We are taking dosages a lot lower than this. My neuro stated he wouldn't want me to go above 2 mg/day. I asked him if I could taper down in a few months and see if my symptoms have improved, and he agreed that would be fine. He seems to think this is something that I am going to deal with for the rest of my life. I hope to prove him wrong.
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Re: To take klonopin or not (tolerance and dependency).

Postby BFSBurger on February 15th, 2013, 12:39 pm

Whats interesting to me is that your doctor calls BFS Nueuromytonia. Many here have told me we simply do not have that, but I can't keep track of all the reasons why.

I think that the issue of anxiety can be so severe in some people, that they will never find relief without something like Klonopin. I agree with your doctor about not switching it up. Also, tolerance can be avoided by creative dosing though you should speak to an expert on Klonopin before doing this. The logic here would be simple: With no Klonopin at all, you're at 90% severity. So with even maybe 1 klonopin a week, you could reduce that to 70% severity on the aggregate. Or once every 3 days, you could reduce it to 50% on the aggregate. But for the most part, doctors can't think creatively, so its "Once a day no matter what". And this kicks you down to 20% on the aggregate - but you run the risk of tolerance. Again, don't try creative dosing with something like Klonopin unless you've got an expert who says its safe to do. But in general, I think there are ways to avoid tolerance with meds, without having to run into major withdrawal problems. Docs could also try dosing much lower than normal doses for longer term use. But i rarely see this level of creativity either.

Anyways - back to what I said before - for those who can not get their anxiety under control, I really really do believe that these individuals only hope would be something like Klonopin.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: To take klonopin or not (tolerance and dependency).

Postby aztwitchy on February 15th, 2013, 12:59 pm

plenty of people have good success with taking low dosage benzo on an adhoc basis....this means 1-2x a week (.5 - 1mg dosage ) ...mostly around bed time.

great for panic attack type anxiety or sleep issues.

you might also consider speaking to the pharmacist about your concerns....I have found a lot of times they are much more knowledgable about the medications, dependancy, tolerance than the doctors....
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Re: To take klonopin or not (tolerance and dependency).

Postby ag2002 on February 15th, 2013, 9:50 pm

BFSBurger,

Maybe I don't have neuromyotonia, but intead just BFS. Aftering reading this on wikipedia, I would say I am at the lower end (less symptoms) of the peripherial nerve hyperexcitability scale. I guess it all has to due with severity of symptoms. I only have fasiculations, parasthesias, and I used to have pain. I have not had much cramping. I might have to talk to my neuro about the use of his medical verbage. LOL Wiki says,"Neuromyotonia is a type of peripheral nerve hyperexcitability. Peripheral nerve hyperexcitability is an umbrella diagnosis that includes (in order of severity of symptoms from least severe to most severe) Benign Fasciculation Syndrome, Cramp Fasciculation Syndrome, and neuromyotonia. Some doctors will only give the diagnosis of peripheral nerve hyperexcitability as the differences between the three are largely a matter of the severity of the symptoms and can be subjective. However, some objective EMG criteria have been established to help distinguish between the three." http://en.wikipedia.org/wiki/Neuromyotonia
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Re: To take klonopin or not (tolerance and dependency).

Postby aztwitchy on February 16th, 2013, 12:32 am

Ag u r right....neuromyotonia is pretty severe as I understand and truly autoimmune in nature. My neuro refuses to use bfs as my diagnosis but rather calls it nerve excitability. Neuromyotonia is difficult to establish for most neuros...regardless a couple of the vets on the board made some solid points that treatment of bfs vs neuromyotonia can essentially be the same.

Some time back I read that's the antibody testing for neuromyotonia only shows up a third of the time which they hypothesize there are other antibodies yet to identify. This stuff makes me wish I was back in school to become a scientist and research some of this stuff.
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Re: To take klonopin or not (tolerance and dependency).

Postby jjhnn8600 on February 16th, 2013, 3:38 pm

I'm having an awful time coming off klonopin, and it wasn't at a high dose. I would NOT go back on this drug once I'm fully weaned...
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Re: To take klonopin or not (tolerance and dependency).

Postby chicagobfs on June 18th, 2013, 10:39 pm

This is an old post however I wanted to add that my mother have Paramyoclonus multiplex (Friedreich's disease) since being a small child and takes klonopin for that reason for many years. She had never increased the dose. I do believe that taking this drug for anxiety is more risky than taking for other neurological disorder. I personally have no experience
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Re: To take klonopin or not (tolerance and dependency).

Postby ag2002 on June 20th, 2013, 10:30 pm

Thanks for the info. chicagobfs. It is reassuring that it is possible to be on the med for years without increasing the dose. I am still taking klonopin 1.25mg a day. I still twitch some, but other than that I hardly have any symptoms. Hopefully I can try to wean sometime and see if the symptoms are gone.
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Re: To take klonopin or not (tolerance and dependency).

Postby mike fla on June 29th, 2013, 8:23 am

If you decide to ween down it is helpful to not put too pressure on yourself to get off the meds. When I was taking klonopin I weened really slow (even though I was at a small dose to begin with .5mg/day). I started by taking .25mg every other day and eventually jumped down to .25mg/day after about a month. The same was true for completely going off the medicine. If I was having a bad day (cramping, twitching or sleep problems) I would go ahead and take the full .5mg. So if you ween off there is no time limit to how long it will take.

It sounds like the 1.25mg is taking care of most of your problems. I don't think klonpoin will ever completely knock out the twitching (or other symptoms) so you might want to be careful upping your dose if you start having some symptom break throughs. A part of dealing with BFS is to accept that things will never be perfect and you may have at least some twitching for the rest of life. For me klonopin was like a break. It calmed things down enough so that I could put my health in persepective and start to move on with my life.
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Re: To take klonopin or not (tolerance and dependency).

Postby missingoutonlife on June 29th, 2013, 9:20 am

I have been on this medication for 5 years. I used to take up to 1.5 mg a day and found that it did help with the twitching somewhat. I only did this maybe during the first year of twitching. When I was doing better, I lowered it to .5 mg a day just at night. There were occasions here and there when I took an extra .5 mg on a particularly bad day of twitching but usually stuck with the .5 mg. I was fine with that but recently had to increase to 1 mg per day (.5 mg 2x per day) due to throat spasms. The Klonopin is fairly effective for the spasms, although admittedly I still have days that are worse than others. It was sometimes helpful with the tongue twitching too. My neuro seems to think it's a good drug for this condition and doesn't see anything wrong with me continuing it and upping to 1.5 mg again if my issues have been aggravated again. He says it's a low dose as well and since many other meds had a bad effect on me, he thinks it's best to go with what is tolerated.
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Re: To take klonopin or not (tolerance and dependency).

Postby Seepi27 on July 1st, 2013, 6:27 pm

missingoutonlife wrote:I have been on this medication for 5 years. I used to take up to 1.5 mg a day and found that it did help with the twitching somewhat. I only did this maybe during the first year of twitching. When I was doing better, I lowered it to .5 mg a day just at night. There were occasions here and there when I took an extra .5 mg on a particularly bad day of twitching but usually stuck with the .5 mg. I was fine with that but recently had to increase to 1 mg per day (.5 mg 2x per day) due to throat spasms. The Klonopin is fairly effective for the spasms, although admittedly I still have days that are worse than others. It was sometimes helpful with the tongue twitching too. My neuro seems to think it's a good drug for this condition and doesn't see anything wrong with me continuing it and upping to 1.5 mg again if my issues have been aggravated again. He says it's a low dose as well and since many other meds had a bad effect on me, he thinks it's best to go with what is tolerated.


Your neuro is an idiot. Putting someone on a benzodiazepine for anything more than a month is setting them up for a mighty fall. I was on diazepam - at a relatively low dose - for six years, and the subsequent withdrawal from this hellish drug has made my life a living nightmare.

I just hope, for your sake, that when you finally wean yourself off them, you don't undergo the tortures that I have experienced. Why on earth you feel that you need to take something to 'help with the twitching' is beyond me, anyway. If your twitching is benign, which I assume it is, then why on earth do you want to use benzodiazepines to dampen it down? Twitching won't harm you, but benzos will. Using benzos to 'treat' twitching is like using morphine to treat a slight headache.
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Re: To take klonopin or not (tolerance and dependency).

Postby aztwitchy on July 2nd, 2013, 10:43 am

Seepi27 wrote:
missingoutonlife wrote:I have been on this medication for 5 years. I used to take up to 1.5 mg a day and found that it did help with the twitching somewhat. I only did this maybe during the first year of twitching. When I was doing better, I lowered it to .5 mg a day just at night. There were occasions here and there when I took an extra .5 mg on a particularly bad day of twitching but usually stuck with the .5 mg. I was fine with that but recently had to increase to 1 mg per day (.5 mg 2x per day) due to throat spasms. The Klonopin is fairly effective for the spasms, although admittedly I still have days that are worse than others. It was sometimes helpful with the tongue twitching too. My neuro seems to think it's a good drug for this condition and doesn't see anything wrong with me continuing it and upping to 1.5 mg again if my issues have been aggravated again. He says it's a low dose as well and since many other meds had a bad effect on me, he thinks it's best to go with what is tolerated.


Your neuro is an idiot. Putting someone on a benzodiazepine for anything more than a month is setting them up for a mighty fall. I was on diazepam - at a relatively low dose - for six years, and the subsequent withdrawal from this hellish drug has made my life a living nightmare.

I just hope, for your sake, that when you finally wean yourself off them, you don't undergo the tortures that I have experienced. Why on earth you feel that you need to take something to 'help with the twitching' is beyond me, anyway. If your twitching is benign, which I assume it is, then why on earth do you want to use benzodiazepines to dampen it down? Twitching won't harm you, but benzos will. Using benzos to 'treat' twitching is like using morphine to treat a slight headache.


whoa seepi....sorry you had such a bad experience with the medications. This however, does not mean others will. Also twitching may be harmless and ignorable to you but "BFS" comes in varying degrees of severity. Some people can't sleep because of it...making symptoms worse. Some people, like me, get muscle spasms and cramps, which can at times be horrible. Some people also have neuropathy which is also miserable.

I agree with you its not really a long term solution but for some people they may need it in the short term to help calm things down and get their sleep back on track.
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Re: To take klonopin or not (tolerance and dependency).

Postby missingoutonlife on July 2nd, 2013, 4:34 pm

Um ouch! :(

I don't believe my neuro is an idiot at all. He is actually chief of neurology at a very prominent hospital in Boston. We have good doctors in my state and I'm fortunate to have access to them. Many people with seizure disorders take Klonopin for long periods of time (up to 15 mg or more) a day. He has tried me on many other meds and none of them were effective and in fact caused AWFUL side effects to me that he rather I avoid them.

Also, I think it's fairly ignorant of you to say "why should I need to take something for my twitching if it's benign?" Why shouldn't I if something helps it? Are you saying I'm weak because I need medication? I live a very active life, and I've weaned to lower doses before with little issue. As I said I was only taking it once a day when it was under control. I have had very bad twitching which you really know nothing about (as you don't know me) and throat spasms that have been very severe that affect me living a normal life. I'm sorry you had such a bad experience Seepi and I respect those who go the natural route but for me I am going with what can help me, even if it diminishes spasms by 75%. Someday I do plan to wean off if possible, but right now it's needed for me

As Aztwitchy said, some of us have spasms (like me, in the throat of all places) and various other issues and meds are needed.
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