Suffering from Full-Body Twitches

[kiwido]

I developed BFS after having a cold. I am sure the cold caused the full body twitches because my mother caught my cold and she subsequently developed the twitches as well. As most of you know, these twitches can drive you nearly insane as they did with me. I would sit in a bathtub for the whole day just so I wouldn't have to feel them. I tried all of the medications. Klonapin and valium just knocked me out and didn't get rid of my twitches. I tried quinine, taking extra potassium/magnesium with no luck. I eventually settled on using Xanax just to be able to fall asleep as well as an SSRI. Again, these didn't get rid of the twitches but made me not care about them so much. I'm a 4th year medical student so I decided to look up real medical literature on the topic instead of relying on online forums. I have learned that if you have some kind of health problem, do not look online for information! Mayo clinic did a study following 121 patients with benign fasciculations and none developed motor neuron disease in life so RELAX (Long-term follow-up of 121 patients with benign fasciculations. Ann Neurol. 1993 Oct;34(4):622-5). 19 of the 121 described having either an upper respiratory infection or gastroenteritis up to a month prior to onset of the twitches. If I recall, 60 of the 121 said their twitches lessened over time (the paper wasn't specific as to if anyone had completely gotten rid of the twitches). In the discussion of the paper they describe the etiology of the twitches perhaps being a persistent viral infection of the anterior horn cells in the spinal cord (which are the cell bodies of lower motor neurons going to muscles). It also could be an inflammatory polyneuropathy, but I doubt this because I was on 12.5 mg of prednisone at the time of onset. So two months after onset, do I still have the twitches (which were ALL over by body happening about every 30 seconds)? Not really. I saw a case report published recently about a woman who had hypothyroidism and had full body severe benign fasciculations (Benign fasciculations responsive to gabapentin. Arq Neuropsiquiatr. 2007 Dec;65(4A):1015-7.). Even when euthyroid her twitches persisted. So she was prescribed neurontin (gabapentin) 300mg three times a day and her twitches stopped. I decided to give it a try. I started at a low dose and ramped it up to 300mg twice a day and within 3 days twitches were pretty much gone. The paper recommends 300mg-600mg three times a day and says this dose is safe. Neurontin has no addictive potential like the other stuff and is generally a safe medication to take. Side effects include drowsiness, thinning hair and peripheral edema but these are supposedly rare. I don't feel any drowsiness when I take it. I'm not saying this will work for everyone but it worked for me. I would recommend talking to your neurologist about it and give it a try, though you should realize that this medication is not FDA approved for this. In fact it's really only approved as a secondary medication for seizures but it's used for a whole host of things off label. It might only work for those of us who have a viral etiology as neurontin is a nerve medication, not one that affects the muscle membranes. Again I'm not a doctor yet so don't take my advice as officially medical.

 

[TipGrrll2]

Greetings Medical studentWhile you were searching I am supprised you did not come across anything about Isaac Syndrome/Neuromytonia .RicktSydney Australla

 

[AllGoodHere]

And how long have you had symptoms? Don't lose the thought that you could, over time, see some decrease as the body repairs itself. Many of us have. Did your Mom also keep the twitches? There are a few people here that have seen this tendency of families , couples, etc., both having twitches...The neurontin (gabapentin) helped me also but I had side-effects other than the standard "drowsiness" which developed with use. The dosage had to be adjusted (increased after 1 1/2 months) and that is when I developed more side-effects, such as forgetfulness. I scaled it back to evenings only (to help w/ sleep - overlapped it at bedtime) then after ~3 months stopped altogether. My neuro worked with me on this as none of the other Rx's were good for me. It seems that since individual response is erratic - you really need your doc's help with monitoring and adjusting. It is great that it is working for you though, we all really need a break from the symptoms from time to time as it wears us down.

 

[Krackersones]

Med Student,Thanks for sharing your story and more importantly your successful treatment. I take .5mg of Klonopin for my twitching twice a day. I will likely try the med you suggested since Klonopin does not totally eliminate the twitches but does have a positive effect for me. The thinning hair part does worry me a bit since I'm female. Have you gone off the med to see if the twitching comes back?By way of background info (in case you are interested), my twitching started in July 08. It was sudden and went from face to calves to everywhere within less than two weeks. I have had three clean EMGS but then a muscle biopsy showed some denervation and reinervation and a nerve conduction tests showed conduction slowing in my sensory nerves. I have tons of tingling and pins and needs and some lost vibration sense along with the twitching so my sensory and motor nerves are effected. I have had lots of blood tests but two extremely high ANA titres and two tests showing high levels of circulating immune complexes make my neuros think the cause is my immune system attacking the myelin around my nerves. I have no weakness and have actually gotten stronger since this whole thing started because I started exercising.My most worrisome symptoms is the tongue shocks, little flickers (I feel), buzzing etc. I get these everyday but usually only a couple times each day and they last just a few seconds. Have you ever had tongue symptoms?Krackersones

 

[thedirtytruthycynic]

My Neurologist has now tried a range of anti-convulsant drugs to help treat my symptoms, including Gabapentin. It seemed to have fewer side effects than many others, except for the fact that I put on half a stone in weight. Unfortunately this sort of defeated the object, as I wanted to reduce my exercise intolerance and actually lose some weight. While Gabapentin initially seemed to reduce my symptoms, I found I was having to slowly increase the dosage as the months went on to get any effect until I was on 3x 600mg per day. I then suddenly got lymphocytic vasculitus, which was not thought to be related to the Gabapentin but I came off it completely anyway. My BFS symptoms (fasics, pain, cramp/spasms) have slowly increased since coming off, but it looks like Gabapentin was probably having less effect than I thought except maybe in helping reduce the pain. At least I lost the weight I gained while on it pretty quickly! I hope Gabapentin keeps working for you, but looks like I will need to make another appointment with my Neuro soon to try something else.

 

[utchinson]

This is one of the best and most helpful posts I have seen in some time regarding the onset of BFS. I developed BFS in April of 2007 and my feet and calves have not stopped twitching since. Random twitches all over but only for a short period of time. I also have the cramping and muscle pains. I have experienced several flares and have suffered the initial emotional stress when the symptoms first presented. I presently take 900 mg of gabapentin in three 300 mg doses per day. I increased the dosage during a flare earlier in the year and it did not work out...I began having suicidal thoughts. With assistance from my neuro, I backed down to the 900 mg daily. It seems to control the nerve pain, however, it does nothing for he twitching. I have found nothing that controls that.I believe that a viral infection of some type created this situation in conjunction with a genetic disposition. I think the viral infection goes back years, way before the onset of BFS. I recall nearly 30 years ago having so many canker sores in my mouth that I did not think I could eat or sleep. That situation never reappeared but I always get a strange rash on my chest when getting sick and will once or twice a year develop a severe sore throat as I get sick. I am convinced there is a link.Nonetheless, I have slowly accepted BFS and its limitations, which are not many other than losing some sleep, not being able to run any more and dealing with the flares. I know that not worrying about it is helpful.

 

[kiwido]

Hi I just wanted to update everyone about my so called BFS. I'm no longer on neurontin. I still have twitching all the time but I don't care about them anymore (it's like wearing clothes now, you don't notice them). Let's face it, the meds don't work very well and if they do, they have side effects that make it not worth it for a benign condition. If anyone is interested, I had my ANA tested a while back and I had completely normal levels.

 

[BarbiePetals]

My neurologist just prescribed this drug for me. I have not decided if I'm going to take it or not. Seems like none of these drugs really do much in the long run. I also had an ANA test which came out negative. I also had a CPK test which was normal and recently a brain MRI which also was normal. I am finally beginning to realize that this is a benign condition. Honestly, I don't even think there are any other tests I could possibly have unless I wanted another EMG which I think would be pointless. I think after awhile you just come to terms with this. Yes, it takes awhile and many tests later but I think everyone eventually gets there.