Hi alljust wanted to give you an update regarding my latest visit to neuro and also for help please as I am really struggling at the momentJust been yesterday to see the neuro after having my second EMG done week previously, emg was good picked up the twitches in my calves but no weakness or nerve damage, also had lots of bloods done again everything fine, so I know that is reassuringNeuro said that it sounds like my nervous system is firing off for some reason and hopefully it will get back to normal again sometime (not really much help to me)he believes that my anxiety is making things worse but says that the only meds he can give me is a medicine for epilepsy and it can have bad side effects, and he dosnt want to see me again for 10 weeks.Anyway these are my concerns and questions if anyone can help me pleasedoes anyone take any such meds for BFS?Does anxiety meds help with the symptoms ? I am thinking of askig the doc for some and see if that will calm me down and subsequently help with the twitching etc?The twitching in my calves is now none stop also with a lot cramping in calves and feet, is this normal?I am really struggling with this now I am 3 months in to this and feel I cant take any more, it seems to be getting worseI dont know what to expect next and really worriedPlease help anyoneThanks
Neuro Visit: Update & Help Requested
- Thread starter zlilyluv
- Start date
Hi Lilyjames,I can completely relate to you and I can help answer your questions from my experience. First of all, you should feel COMPLETELY REASSURED after your emg. Mine turned up the same. They found fascics everywhere on me, both upper and lower body. But nothing else and I was told these are benign fasciculations. My calves and feet go all day long and have done so for a year. I also have very frequent twitching everywhere else in my body including my tongue (I hope you never get those, but if you do don't freak). My calves and feet cramp quite often. This is very common in BFS. My doc presecribed Gabapentin originally. Its an anti-seizure med used for epilepsy. I would recommend NOT using this med. For me, it caused all kinds of sleep disturbances and I actually believe it made my twitching worse! I took it for 60 days. However, some people on here have had some mild success with it so its up to you. I also tried Clonazepam which is a muscle relaxer. This is the only med that I have had great success with. The relief is temporary and I'm not sure if it actually reduces the twitches or just makes me so relaxed that I don't care about them. Either way, it works. I only take it as needed. I've taken it once in the last 5 months but I have it ready just in case I have one of those days.I also tried Celexa last December. Its an SSRI (anxiety med). My experience with Celexa was that the first 3 weeks actually increased my symptoms which is normal with that drug. Then after 3 weeks, my anxiety started to come down. I took it for 3 months and then stopped and my anxiety has been down ever since. I don't know if its a lasting effectd of the Celexa or if I just got bored of worrying about BFS. As far as what can you expect.... its true what your doctor said that worrying about BFS will make it worse. The key to getting over BFS is to get your mind to believe that this is not going to hurt you. Its annoying and extremely frustrating, but its not hurting you. Once you can get to a point where your twitches are just there and you don't care, you will be cured. Your twitches may wax and wane depending on your overall anxiety level. They may go away, they may never go away. But just know that lots of us are going through this with you. We're all going to be ok. -Matt
Hi MattThanks you v much for taking the time to reply and for replying so promptly.I am going to have a word with my own GP next week as she should have had all letters from the neuro by then and discuss meds with her.I think I may go down the route of anxiety meds (if any) and that seems to have had most success for you by what you have been saying.this is just the weirdest thing I have ever experienced with my body and somedays I am not so bad but then it throws up another symptom and I just think where will it all end.Just hope I get to the acceptance very soonThanks again
Hi lilyjames,I was taking Gabapentine wich is the most widely used antiepileptic drug for about 2 month at lowest possible dosage. Yes I was a zombie like and stumbling creature for two weeks but then 1) I slept exceptionally well 2) my twitches gradually decreased. Especially because i quit Rexetine, I believe 
)))It seems like everybody has its own experience on that medicine and you might try and see if your body prefers Gabapentine or SSRI (which could be prescribed by phiciatrist rather then neurologist) or Benzos. Also there are different kinds of antiseizure drugs. Gabapentine is only one, another one is Lyrica (Pregabaline), there are valproates etc., so generally I wonder that your doc says so openly and for sure that the drug has awful side effects without even tring lowest possible dose on you. Pregabaline is often used as OTC antianxiety drug by the way, gabapentine has no such usage, however in my case if was useful.In fact I would advice to try. Nobody can tell you if that would be good or bad for you, however there is a potential to get a significant relief, if that would be your case. and think about looking for psycho professional who can prescribe you SSRI or benzo or any other antianxiety medication (SSRIs are also different and vary in side efects in a very individual manner, so we must titrate ourselves to the proper medication and dosage)have a good luckRegardsYulia
)))It seems like everybody has its own experience on that medicine and you might try and see if your body prefers Gabapentine or SSRI (which could be prescribed by phiciatrist rather then neurologist) or Benzos. Also there are different kinds of antiseizure drugs. Gabapentine is only one, another one is Lyrica (Pregabaline), there are valproates etc., so generally I wonder that your doc says so openly and for sure that the drug has awful side effects without even tring lowest possible dose on you. Pregabaline is often used as OTC antianxiety drug by the way, gabapentine has no such usage, however in my case if was useful.In fact I would advice to try. Nobody can tell you if that would be good or bad for you, however there is a potential to get a significant relief, if that would be your case. and think about looking for psycho professional who can prescribe you SSRI or benzo or any other antianxiety medication (SSRIs are also different and vary in side efects in a very individual manner, so we must titrate ourselves to the proper medication and dosage)have a good luckRegardsYuliaas for twitching and cramping - it is "normal" because you are anxious, but of course it is not normal in terms of good self-feeling. Actually the less anxious you would be, the more probably your twitches would decrease or at least you would not give them so much attention (like it happened to our dear friend Matt)
DesertKnight
Well-known member
Lilyjames, It's great all your tests came back normal! Now you are like so many of us have been/still are and are left to deal with the anxiety BFS causes. Medication wise, I will say that I was on an SSRI, switching to a SNRI when my BFS started last August. Personally, I have had the most success with anxiety using a benzo, though I do not use them regularly. Currently I am not on any serotonin medications, because of sensitivity, but what is good or not good for me may not be the same for you. Accepting that BFS is benign, along with the wonderful support I get here, on chat, and from my therapist has proven to be the best medicine for my anxiety. I still have anxiety, but I am learning to live with it and not let it rule my life. But that takes time, and you are new at this so follow your gut instinct and do whatever it is you need to do to get better.Frances
DesertKnight
Well-known member
I do still twitch, not like I did in the very beginning when I was having tens of thousands a day though. At one point I had nearly stopped twitching, until I started exercising again, and it has stayed at a consistent level since then. I twitch from head to toe, with the majority of them in my legs, my shoulders, my back, and tongue. It is hard to say whether the decrease in anxiety slowed my twitching or if it just happened on its own. Getting control of my anxiety was key, either way, because I was driving myself insane worrying about every new twitch and sensory symptom. I would say my anxiety is at a 10 year low for me...unfortunately I'm still twitching away. The good news is, I'm not worrying about it anymore.Frances
Thanks again for all your supportDoes anyone get the limbs 'falling asleep' thing, I get my little finger and next finger falls asleep when I am asleep, also my food sometimes, is this normal for BFS?if so why do you think this happens?seem to just accept the twitching then the cramps and asleep limbs start!!!! 
Hi lilyjames, actually the palm is innervated by two main nerves - ulnar and carpal (roughly).all issues happen to pinky and ring finger and partly to the 3d finger are related to ulnar nerve. all issues happened to thumb, index finger and partly 3d finger are attributed to carpal nerve issues. it is very common for BFS sufferers to have more prominent compression issues than in general population. So it means that during sleep you compress a bit your ulnar nerve (probably due to hypermobile forearm joints or just by fact that you sleep on your forearm - and then you feel your 4 and 5 th finger numb. it is not nasty.) I can have my hands numb even if I sleep with hands placed over my belly (like the kings and queens sleeping on the ancient burial sculptures), and believe me, my belly is realtively small 
)) so compression is easily achievable for any common person.I do not understand about the food, but if you mean any feelings related to feeding process (like swallow issues, lump in the throat, cold or hot feeling in the esophagus, esophagal pain and aches), that is all well known for BFS sufferes and might be attributed to hyperexcitability of so called vagus nerve supplying our gastrointestinal tract and stomach. result of that hyerexcitability is either weird sensory issues (like right now i feel cold patch in my esophagus, almost like I had gulped a piece of icecream - sometimes it happens to me but seems to be harmless) or typical or atypical GERD flareups (heartburn, acidic taste in mouth, pain and spasms in the esophagus, coughing after meals or when speaking/laughing, getting food drawn into trachea, food regurgitation, air regurgitation etc.)oh I understood that you might mean foot, not food - ok, foot is about the same as hand - you can easliy compress one of two or three main nerves supplying our lower limbs so they become numb a bit. Do you have any hypermobility signs (like touching forearm with thumb finger, or ability to bend down with sraight legs from standing position touching floor with the palms, or do you have any extra movement in any joints (fingers, toes, pelvic, jaw, shoulder?) if so, with the age those joints become even more loose and could easily compress the nerve like it happens to me now. it is just a matter of watching and excersises (i watch myself but not excersiseregularly for now, alas!).
)) so compression is easily achievable for any common person.I do not understand about the food, but if you mean any feelings related to feeding process (like swallow issues, lump in the throat, cold or hot feeling in the esophagus, esophagal pain and aches), that is all well known for BFS sufferes and might be attributed to hyperexcitability of so called vagus nerve supplying our gastrointestinal tract and stomach. result of that hyerexcitability is either weird sensory issues (like right now i feel cold patch in my esophagus, almost like I had gulped a piece of icecream - sometimes it happens to me but seems to be harmless) or typical or atypical GERD flareups (heartburn, acidic taste in mouth, pain and spasms in the esophagus, coughing after meals or when speaking/laughing, getting food drawn into trachea, food regurgitation, air regurgitation etc.)oh I understood that you might mean foot, not food - ok, foot is about the same as hand - you can easliy compress one of two or three main nerves supplying our lower limbs so they become numb a bit. Do you have any hypermobility signs (like touching forearm with thumb finger, or ability to bend down with sraight legs from standing position touching floor with the palms, or do you have any extra movement in any joints (fingers, toes, pelvic, jaw, shoulder?) if so, with the age those joints become even more loose and could easily compress the nerve like it happens to me now. it is just a matter of watching and excersises (i watch myself but not excersiseregularly for now, alas!).