I've only begun my internet scouring. I ran across this report on the wikipedia page from an individual who had BFS and resolved it.His method (or rather his doctors method) was what I assume was an ongoing low-dose course of muscle relaxants. This strikes me not only as intelligent, but targeted, and fully plausible. The only concern would be the addiction risk for those individuals who have propensity for addiction. I personally don't, thank God (except with pizza and oreos).This just gave me some hope, so I am going to begin researching it a bit more:"I've been through BFS, and my anxiety resulted from, it did not cause, the problem. My neurologist told me that this was the standard experience: strange twitching, pain resulting from the twitching, severe anxiety (most often found in patients intelligent enough to do research on the symptoms or whose primary care physicians send them to a neurologist out of concern that they are suffering from ALS.). He also informed me that he had reason to believe that the condition was triggered by a cold or flu virus. He put me on an anti-anxiety drug but not, primarily, to allay anxiety: the reason was that it was a direct muscle relaxant and it effectively alleviated the symptoms until the condition cleared up on its own. This article requires MUCH more serious medical research.68.72.84.142 23:23, 18 April 2007 (UTC)"Now if only I could find out *exactly* what drug he was taking, we'd be in business. So *beep* he didn't bother to mention it. "Hi I have cured my BFS with a medication but im not going to say its name". maybe he assumes all muscle relaxers are equal. My approach either way would be to find the standard dose and whiddle it down to a minimum dose. You can't typically take them every day I assume. Maybe some people do. I wouldn't. But if you can keep things "calm" for long enough, I believe this could very well calm the system and resolve the hyperactivity. I work in health, and there are numerous parallels to this logic in the treatment of other conditions. In fact it is one of the most common methods for many types of treatments. One (very bad) example is when I damaged my neck working out. I was told to keep off it awhile and let it heal, but this did nothing. Ongoing pain for weeks. Until I realized that this type of damage is inflammation related as well. And healing can't take place while the item is "enflamed" still. So the solution? Low dose anti inflammatory, whether or not I needed it.And that is the key. WHEHTER OR NOT i needed it. Whether or not I was having symptoms at that moment. I kept the anti inflammatory in place for a prolonged period of time. Something you normally would never do because its not super healthy. But given the situation it was warranted. This ongoing "calming" of the enflamed muscle for a period of 2-3 weeks worked. It allowed the muscle to relax, calm, and heal the tear. Another example - a quite good one in fact - is something callled post infection inflammation of the lungs. You may have had it before. I definitely did. Numerous friends of mine have. An infection gets into the lungs, whether it be from a virus or bacterial, and the lungs enflame themselves. Redness, inflammation, and coughing. Nonstop coughing. You cough for days and days, uncontrollably. Even to the point of pain sometimes. You're put on medications, or time passes, and the infection clears. But the coughing doesn't. Its a very common scenario. The virus came through, got everything riled up, and once it was gone, your body was so hyperextended that your lungs just kept with the irritation and inflammation. I once coughed nonstop for a month after an infection had cleared. I went to doctors and dealt with their retardation and cluelessnes. X rays of my lungs. Talks of Lung Cancer. Then finally (doesnt this always happen) a random conversation with a doctor who actually knew his sh*t ... he looks right at me and says: Advair. I said what? "Advair. Its a once daily inhaler of steroid anti-inflammatories. It will calm your lungs and give them a chance to chill out." I needed one inhale of Advair after a month of uncontrollable coughing .... and my lungs calmed. Others need to take it several days to keep the calm down for awhile and allow the hyperactivity to pass.There are many other examples where calming a region results in freeing up the region to heal. Or simply to "chill it out" in our case. So maybe muscle relaxers - long term low dose regimen, will work. This is purely speculation. I admit. But thats how solutions are found. If this works, I would take it a step further and say that those who are just beginning with symptoms, may not need to take muscle relaxers as long. Those who have had it for a long time, may need longer regimens. This is pure speculation, but im latching on to one guys statement - rather casual and off his cuff - that he "went through BFS already" as if it were a passing experience. I am going to begin looking into muscle relaxers and determine which one is best for this. And then i am going to get some, and begin treatment. As a side note - i also saw a comment about muscle relaxer therapy by a neurologist on another web site but glazed over it thinking it was one of a million retarded ideas. Ill try to find it and get the two drugs he mentioned.Calming hyperactivity is a logical, sound, and reasonable method.Ill let the experts comment, and decide. I am but a newbie.
Finding a Solution for BFS
- Thread starter BFSDiner
- Start date
Just an update on this -There seems to be two elements here. 1) Anxiety medication and 2) Muscle relaxants. There are straight-muscle relaxants that have no anti-anxiety .... and then there are straight anxiety meds that don't do much as muscle relaxants. And there are some which are hybrids. I keep being told "Soma" by pharmacists. However, one recommended a pure muscle relaxer: Flexeril.The question I have is whether its the "anxiety" element that would calm the nervous system more? Or the muscle relaxant that would have a larger calming effect on the true "hyperactive" element....Any ideas?I guess the real test is to see which one stops the twitching. And can be taken for extended periods of time without too much risk of addiction.
DesertKnight
Well-known member
My two cents...this *could* be the reason my BFS has lessened so much. I have been on muscle relaxers (specifically Baclofen 10mg morning and lunch, Zanaflex 4 mg at bedtime) for the last 8 months for conditions unrelated to BFS. I still have symptoms of BFS, but they are not continuous as I have been fortunate to have several breaks from my symptoms all together. I have discussed this possibility with some here on the boards as well as my pain doctor. I'm not fully convinced this is why my symptoms have lessened so much, therefore I don't go around telling people to get prescriptions for muscle relaxers. There are some potentially serious side effects with those medications so one must carefully weigh the risks and benefits before trying any particular drug therapy. Frances
I was prescribed klonopin by my psychiatrist for anxiety. I have had BFS type symptoms for 10 months now. Not diagnosed with BFS. My anxiety started after my symptoms started. I had sensory symptoms and twitching. My neurologist did a somatosensory evoked response test on me and it came back abnormal. He stated that my problems are coming from a problem in the nerve pathways between my brain and base of my neck and that it is not structural and I have no signs of infection. Anyways, I am taking klonopin as follows: 0.25 mg morning, 0.25 mg afternoon, and 0.5mg at night. Almost all of my twitching has disappeared and the buzzing sensations in my feet are gone. I plan on discussing this with my neurologist and asking him what other meds might work better without the risk of dependency. Klonopin is used as an anxiety med and a seizure med. It has anticonvulsant and antianxiety properties. It hits 2 birds with one stone. He also put me on welbutrin for depression, but I am scared that will eventually increase my symptoms seeing as how it is a norepinephrine reuptake inhibitor. Time will tell. I will keep y'all updated. Other things that help me are keeping busy with doing hobbies, hanging out with the family, getting out in nature, and of course praying to and worshiping Jesus (the only true healer).
I was half expecting to get chided as a clueless newbie when i started this thread, but its interesting hearing that some people are having results.Apologies to any veterans out there who are biting their tongue, having been down this road before. I appreciate your tolerance.My friend is on Klonopin 2mg daily just as his regular daily dose, so I gather 0.25 is extremely small. Thats good news. Taking the least necessary to handle the problem.I was given xanax by my doc - also very low dose (0.50) and will likely try it tonight if my finger doesnt settle down. Need sleep.Also began 500mg magnesium today.
otential downsides for sure...I was about to take my xanax tonight before bed for the first time but because of that thread have decided not to.It sounds like if you did go this route of "calming' the nervous system long-term youd have to do an extremely, extremely, extremely slow and long tapering process. Like im thinking at least 25% of the total duration you were on it ... maybe longer. Maybe you'd get yourself to the point of no twitching then maintain dose for awhile ... and slowly begin to taper until you begin to twitch.I dont know. The more I think about this the harder it seems like it could be. The very act of taking something to suppress .... could cause reflex twitching if removed.You'd have to know exactly how long was sufficient to calm the twitching .... before you begin tapering. And im not sure how you'd know that. And then the taper off would have to be so unbelievably slow ...
Yes the taper should be long but I don't know about 25% of the time you were on it (except if you are on high doses). When I tapered down from .5 to .25 mgs per day it only took 2 weeks. I almost stopped taking it (was taking .25 every third day) but got a really bad cold which drove my twitching crazy so I ramped back up to .5 mg/day but am now back on .25mg. The main thing I am using it for is to help sleep and it does help with my symptoms. I do think if you are taking 2-3 mgs per day that it would be hard to come off of.I would say take it if nothing else is working and you are really struggling. It definitely got me back to normal.
Do people who get to zero twitches have relapses? I mean even if they're not on something to suppress?That would be so depressing. To get to ground zero again of no twitches. And then have it start all over again because of a cold ... I swear its so similar to herpes .... i really wonder if Valtrex would suppress twitching ....Doctor Google. Search "bfs and valtrex" and "bfs and acyclovir"
DesertKnight
Well-known member
My twitching completely subsided for three weeks in August, and even though I was disappointed it returned it was really no big deal. As for Xanax, well, I took it on an as needed basis for well over a decade. I did not take it every day for more than a few weeks at a time and did not seem to have any serious withdrawal. (At least none I noticed.) I have visited with enough fine folks here though to know my experience is exceptional and that for many dependence turns into a nightmare. Having said that, be careful with the use of benzos, they do serve a purpose, but you do not want to wind up with a dependency issue on top of BFS. Frances
AllGoodHere
Well-known member
Haven't been here in a while and dropping by saw this post about muscle relaxers. I have some experience with these so here goes. My neuro first gave me Flexeril for muscle spasms - it seemed to make me just as sleepy as it did calm my muscles. Then we tried Amrix, a time release variation of the same drug, cyclobenzaprine. Muscle relaxers really do not work just on the muscles so whatever type you take they will affect you overall so you need to start with really small doses.Pros - they seemed to work fine at first, they cut back on muscles spasms and tension, twitches that result from tense musclesCons - you build up a resistance to their magic rather quickly if you take them consistently. They have a warning not to take for more than 3 weeks for a reason. When I had to up the dosage the 3rd time ~ the end of the 3rd week (doctor said to - that it was a normal response to need more) I just quit them and went through a withdrawal. Since it was the first time it had ever happened to me I didn't know what was going on - my doc basically said that I was a bit more sensitive to drugs than most people. It was freaky and I wouldn't wish it on anyone.So IMO - these are only a short-term solution and most people with some variation of BFS (orBCFS as I had) will not be able to work through and 'get better' in the time it takes to build up a drug resistance to these. If you just need to get some sleep then they may be a good thing for you to take with dinner so you can get some rest over short periods of time. It's hard to heal from anything if you can't rest.As a point of interest to you all who are newbies; I am better now. Occasionally I still get spasms, etc., in my sleep (no more than once every few months), and my muscle tension may ramp up from time to time but basically I consider myself 'cured'. When I do have a repeat session of BCFS I can usually get through it and not let it escalate - this reoccurrence is usually tied to tension in my life, mental, physical, or both. I think this happens since I had BCFS for long enough that it became somewhat habitual response ingrained much the same way a reflex is - something you can control once you are aware of what's coming at you but not when taken by surprise. Well, that's a long story so will leave it at that.Best of luck.....
I can only speak from my own experience. I do not crave this medicine and I do not feel a need to take it. I even forget to take it sometimes. Therefore, I do not feel that it is like cocaine or another "addictive" substance. I did not say that there are no issues with withdrawing from klonopin or that it can cause bad side effects. For example, when I stopped taking it, the second night I was having trouble with sleep disturbances and my twitching definitely picked up. I am also careful to note in my posts that it is a medicine that should be taken carefully and that I understand people who do not want to take it. I also feel that it is important to try to limit your dosage to least amount that is needed to help.Given all of that, I do have to say that Klonopin helped me immensely. It helped me calm down from that initial craziness when I could not sleep at all, twitching/parathesia/ numbness all over my body, blood pressure that peaked at 160/100, weight loss (over 15lbs in one month), etc. Under those circumstances yes I feel that klonopin was warranted in my situation and I am glad that I went that route. I cannot imagine where I would be right now if I did not take it.So if you have a different view than share that perspective and don't attack someone for sharing their opinion based on their own experience!
WindyCityGentleman
Well-known member
I take low dose of flexeril for over a year now for my headaches. I also had much less twitching during that year... But it newer stopped not even close to a cure
There are a good number of veteran "twitchers" that have taken klonopin over a prolonged period of time to help with their BFS without problems. The dosage of many of the people on this site that I have seen take the medicine for BFS is usally low (.5mg/day) and it still provides therauputic relief for their symptoms (mainly the cramping). Perhaps at that low of a dosage it does not have the same dependancy issues.Furthermore, when I switched from Xanax to Klonopin my doctors (a neurologist at the Cleveland Clinic and my GP) both told me that it does not have the same addictive tendancies as the Xanax. I also spoke at length with my psychotherapist who stated that their job was to get me off the medicine long term, but that at the .5mg/day dosage I would be okay. Perhaps I should have changed my language in the initial post to say that it does not have the addicting tendencies as xanax.I am well aware of the potential problems caused by benzos. I spent a huge amount of time researching the medicine because I too was concerned about dependancy and withdrawl. I also asked my doctors lots and lots of questions. If you look back at my posts on this subject it is not a glowing recommendation and that I try and come across as being cautious. I recommend the same to people reading these posts, but if they are in a period where they are suffering immensely than there is some value to taking Klonopin.I will say again that if you have had a bad benzo experience than please share it so that people know the potential problems.