I have been attending neurologists for 3 years to try to get a diagnosis. I had C4-5 and C5-6 discectomy and fusion in 2009. I do not have ALS or Myasthenia gravis, my MRI showed no lesions (no lumbar puncture done). However I experience severe electric shocks throughout my body. I have (at times violent) muscle twitching, usually when at rest. Sometimes I have concurrent tremor in my legs which makes me feel as though I am 'vibrating'. I will get jerking randomly throughout my body and my head/neck which causes my entire body to jerk. Once I was asleep and woke violently feeling as though I had been physically 'kicked by a horse' which resulted in a headache for days. In the last few days muscles involved include my eyes and mouth. I also get milder muscle twitching that can last for up to 4 hours, not relieved by exercise. I experience numbness in my arms/hands and legs/feet. EMG studies show very little (borderline carpel tunnel). I have exaggerated startle response (most noticeable when I am trying to go to sleep). My neurologist said it was 'migraine syndrome' but I, and an ER doctor, disagree. I don't know what to do to improve my situation because I don't know what is causing it. An assurance there is no neurological basis is not comforting as no explanation of what IS causing it has been given. I am debilitated by this condition - even with sleeping tablets I get very little sleep, the electric shocks are very painful and I have found nothing that reduces my symptoms. Can you suggest anything? Thank you.
I was told I have BFs as well. I hope all mds. are right.I am so scared.. I am a mother.. About 3 months ago my eyelid started quizering, about the same time I got cold spot feelings all over my body. That was weird.. I guess it is parsstehias..Then I got real stressed for a reason and my muscles started twiching.. All over my body.. even my stomach. Now that was real odd and I was then indeed and still am frightened. I have had brain mri amd spine mri without contrast and both turned out normal... I am having Emg next week I hope.. waiting on call for appointment. Now my shin seems to hurt sore and back of my leg. I am now starting to get tingly in left hand.. pin and needle feeling. Eye fluttering has stopped a couple months ago. Twitches come and go. I do not feal weak and have energy.. Suggestionss ? I have alos had numerous blood tests done.. I am low Vitamin b12 and low vitamin d
I have experienced this condition for years, and it has wreaked havoc on my life. For some people it is a minor irritant (in truth the symptoms and severity has a great range among individuals); for me, it has been a pivotal factor in the deterioration of my health. I cannot sleep, and I have lost my ability to focus. I have developed several diseases, but before these manifested; muscle twitching was ruining my life for years beforehand. The end result-- it helped weakened my immune system by causing severe sleep deprivation. Sleep is essential for good health. The term "benign" seems hardly fitting.
I can only say what makes it worse for me. Anticholinergic medications, nightshade vegetables, green tea (including supplements), sodium phosphate in food (particularly processed foods), MSG--like clockwork these exacerbate my condition. I also note too much protein will occasionally cause "deeper" "more aggressive" twitching.
Gabapentin which I originally took for nerve pain seems to slow it down, but it does not resolve it. I mainly take it at night. It seems worse without magnesium, yet even taking the drug and magnesium, it is grievous. I wish I could offer more valuable advice, but I can say experiment with what you ingest to determine if it aggravates your condition. I repeated my "tests" several times to confirm my personal results. Best wishes to all suffering from this.
So what did end up working for you baldeagle? My symptoms and sensitivities are identical to yours. I got BFS from anti-cholinergics, had it worsened by ambien, and then worsened even more by l-theanine. I am desperate for a good night's sleep, as I haven't slept more than 3 hours a night most night, if that. Many are sleepless and I'm having all the same symptoms as you. I look forward to hearing from you. Thanks!
Seventhcandle, unfortunately I have not found anything which stops it or significantly relieves it. I do think the Gabapentin slows the twitching down, but it makes me feel lethargic during the day. I have also tried GABA, a supplement, but I noted no improvement. Some people feel it helps them. I have tried liquid magnesium chloride, which for a few weeks made a slight improvement, but the fasciculations fell back into its old pattern of being without mercy.
I concur with you--Ambien makes the condition intesify--it is always worse a few days after I take it. I used to take Benadryl every night for about 4 years, then discovered it has antichlonergic effects. After I stopped it, I saw no improvement anyway.
You might try GABA , and see if it helps-- but for me it gave my nerves "crawling" sensations after taking it a few times, nor did it slow down the twitching. I definitely suggest taking magnesium in the evening or night; although limited, it helps me a little. I take 500 mg magnesium a couple hours before the Gabapentin, then I head off to bed. Some doctors will prescribe Gabapentin which is a narcotic (brand name Neurontin) for insomnia. For me, it is one of the few medications I have taken which has never made my twitching worse and it actually helps slow it down a bit. However, high doses can tax the liver-- I take milk thistle daily for detox. You would do well to have occassional labs with long term use of Gabapentin.
BFS appears to be a mystery with no known cause. I personally do not think it is an anxiety condition, there are some people who do think so. Too many factors like certain foods, preservatives, medications, etc. have proven to increase the fasciculations without stress being a factor. Ironically, the sheer agony of it produces stress--and stress no doubt makes it worse. Some people have a few twitches they feel during the day, for others, it persists day and night, sometimes long in duration!
I wish I had some helpful answers. I empathize with you and know too well what it feels like being sleep deprived all the time. I assume you have seen a neurologist. My neurologist prescribed Bacoflen, it only "masked" the twitching for me, yet it did make the condition more tolerable at times. Unfortunately I experienced rebound spasticity resulting in ballistic "deep" twitching after taking it on and off in a 6 month period. It also effected my labs and liver negatively. I do not think it is supposed to be used for long extended periods. He eventually prescribed Flexiril. I never took it because of its side effects, as well as antichlonergic qualities.
Have you tried Gabapentin? I am curious as to what your primary doctor or neurologist has suggested to you. I never tried l-theanine, and I will certainly steer clear of it since we have reacted to the same things! Another trigger I left out in my previous post is pectin--I noted every time I eat high pectin foods, the twitches increase in fervor and frequency within 24 to 48 hours. I hope some day a cure arises for this condition, and that it will be researched more extensively. It is not as harmless as some believe.
Oh, what a relief it is to find someone who is going through exactly what I am going through.
I have not tried Gabapentin or anything for that matter yet. My neuro wanted me to try Mirapex for the night-time muscle jerking but I haven't tried it because my muscles jerk before falling asleep and not after I'm asleep. He also prescribed Klonopin but I haven't tried that one either because of the fear of tolerance/addiction and because of my previous reaction to ambien.
L-theanine is supposed to be a natural precursor to GABA and induce feelings of calmness and improve sleep, but you know what it did to me? It gave me temporary restless legs, increased my anxiety, and added new twitches and myoclonic jerks to my already overloaded inventory of them.
Does the GABApentin allow you to get a decent night's sleep or is sleep almost just as miserable on it as it is off it? Do you also get frequent and weird myoclonic jerks (neck, arms, shoulders, stomach, etc.) before being able to fall asleep and in some cases preventing you from falling asleep at all?
Thank you for sharing your experience with me. If nothing else, it makes me feel better that someone out there understands the living hell this is for us.
I wish I could say "yes, Gabapentin, makes a significant difference"--but in truth, it offers only a little relief. It allows me to fall asleep, and with any luck, I might make 2 hours without waking up. It slows the twitching down enough where I get a chance to drift off. There have been a few occasions I forgot to take it, and still managed to get a 2 or 3 hours without waking up.
I have less myclonic jerks now, then I did say 5 years ago. One major instigator for me, was benzodiazipne drugs--these caused terrible myclonic jerks for me. Also medications such as Requip, Sinemet make the jerks worse!! Opiates also pose problems for me. I do think Gabapentin helped me with them. Yet, I still get them infrequently, but have more muscle twitching than jerks now.
I have not heard of Mirapex, but I have read online that Klonopin has helped some BFS sufferers. However, I too am suspicious of it, because most medications have not helped my condition-- Gabapentin being the exception and offering limited help at that. Whatever you do, beware of belladonna in homeopathic formulas--the worse of the antichlonergics I have encountered! I have also tried Valerian and Melatonin. They make me very sleepy, but they do not decrease the twitching, so I lay awake deliriously drowsy as the twitches roll on.
One thing new I am trying is activated charcoal capsules for medications which I feel release toxins in my system which is super hypersensitive. Unfortunately, it does not work with sodium phosphates or certain foods; but I do think it has helped with some of the negative effects I have experienced with Ambien. It is better with absorbing synthetic chemicals, not so good with natural things. So far, I think it helps decrease the intensity of the twitching when I react to certain chemicals, I do not think it has decreased the frequency. Yet I will take any help I can get!
I feel like you--its been difficult for me too--effecting many areas in my life! There are people with more aggressive and relentless symptoms which make a normal life impossible and severely impacts their health. Like Katrina said, it is debilitating! If I ever find something which helps my symptoms, I will be sure to post it here. It has been so nice to talk with someone who understands!