non-stop twiching

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non-stop twiching

Postby ro dash on October 7th, 2002, 6:24 pm

The twiching is non-stop. I can't take it. Does anyone have any suggestions that have relieved some of there twiching. Someone told me to drink tonic water as it has quinine in it. Apparently, quinine reduced muscle spasms which can cause twitching. Tonight, I am having a phone counseling session with a therapist. My husband has had it with me and said I need to talk to someone. This should be interesting. I'm going to tell her all about my twitching, that I have had every test done, every blood test imaginable and have been to every doctor, and I still think I have something wrong with me. This pursuit to find out what is wrong with me has been going on since last June, when I delivered my third child. I had this crawling sensation on my leg, which I still have and increase in my twitching, which I have had for years. My family, friends, husband think I'm nuts. They say "you have had every test . Nothing is wrong." When I went back to a different neurologist in August, I never even told anyone. Because of course he said everything was fine and then I would have to tell everyone [i][b]again[/b][/i] that I am fine and will not be in a wheel chair at age 35. I find that having a glass of wine takes my mind off of everything, but then I twitch more. Does anyone have increased twitching with alcohol? Anyway, I will say goodbye. I have to get ready for this person who doesn't even know me try and tell me I am fine and need to live with this twitching. Thanks for listening. This website has been very helpful to me and I am glad that I am not alone.
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Postby Davidd on October 7th, 2002, 8:37 pm

First of all, take deep breath...you WILL be fine.

Here's my thoughts (in no particular order). You NEED the support from your husband...although the twitching looks like nothing to others, it is so meaningful to those people like us who have it. I have been to many doctors also, most recently a sleep disorders doctor who has put me on a program to get my sleeping patterns back to normal due to all this twitching stuff. He seems to have seen this condition more than one of the neurologists that I went to. The crawling sensation that you are experiencing sounds like a condition called "Restless Leg Syndrome" or at least some variation of that. The drug Klonopin is used for RLS and also for twitching (I know because I've taken it). I personally have stopped drinking caffeine altogether (including chocolate!) and have basically given up all alcohol. I would suggest the same for you unless the glass of wine (or whatever it is) helps relax you and put you to sleep. Tonic water did nothing for me...I tried... I went to see a psychologist who was good to talk to but didn't help the problem.

By the way, no matter what anyone says, even after all the tests, there is still something wrong...something abnormal...even if it's only minor. The neurologists I went to see said that it certainly is not normal to be constantly twitching but that I shouldn't worry about it (of course I didn't sleep for a month anyway). That said...I will continue my search for as long as it takes to figure this mystery out. There IS a reason why it's happening and there HAS TO be a way to correct it...it's just a matter of finding the solution

In the meantime, try as hard as you can to focus on other things...

Good luck and keep in touch.

--David
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Postby SoJerseyMom on October 8th, 2002, 8:40 am

Hang in there, ro dash! You're not crazy. I know it's scary to think you might have something disabling. We've all gone through that. It's especially bad when you have young children who need you. But it sounds like your doctors have ruled out any serious diseases.

I too have that crawling sensation in my calves. Sometimes I feel like I have spider webs brushing my arms. There seems to be a lot of weird sensations associated with BFS.
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Postby Arron on October 8th, 2002, 12:00 pm

hey, I have to point something out here after reading 2 of your posts, do NOT stop living because you twitch. If you like chocolate, wine, beer, coffee or whatever, don't stop indulging on life and the things you enjoy over something that is BENIGN. If you had high blood pressure, a heart problem, kidney or liver problems or whatever, that happens to be life threatening, then by all means, do whatever it takes to aleviate what might cause serious symptoms and/or side effects, but to stop eating the things you enjoy or drinking things you enjoy to help prevent these non-painful, non-life threatening twitches seems a bit harsh to me.

Yes, I too twitch more when I drink.. who cares? I also feel bad after having a night out on the town and a little too much booze as does EVERYONE else.. it's called a hangover... so mine has twitching and or tremoring that goes along with it, big deal. Everyone feels some sort of after effects after drinking any kind of alcohol. So we twitch a little more, don't sweat it. I am certainly not going to stop drinking MY wine, Margarita's and so on because of some little annoying twitches that are in no way going to harm me.. or you for that matter. I eat ice cream knowing that my cholesterol is going to go up, but I deal with that. I eat red meat like there's no tomorrow (gimme a good steak anyday!) and we all pretty much know that red meat isn't that great for you.. but you know what? I could give a ratt's A**! I am going to LIVE and eat what I want and drink what I want because if you cut out all that you like, there isn't much left! With or without these twitches!

NOTHING you are going to eat, drink, take or do (other than relaxing and forgetting about these little twitches) is going to make them go away, period! No drinks or tonics, no vitamins, no minerals no nothing. There hasn't been one single common denominator yet with suppliments, vitamins or anything that has helped a large percentage of people with twitches. Sure, some people say they take copper, magnesium, St. John's Wart or whatever and it helped the twitches go away, well what about the rest of us that have already tried all of that with no change what so ever? Most people's twitches subside after they calm down anyway, whether they are taking any vitamins or suppliments or not... there is a really big placebo effect with this BFS stuff.

If there was a magic medicine, all of the neuro's would be telling us about it and so far, with all of us on this web site and all of the other thousands of other twitcher's out there that post on other web sites (that I monitor every day), have seen literally hundreds and hundreds of neurologists, ALL over the world and not ONE of them can prescribe any kind of medication that will make the twitching go away BUT the one common factor between ALL of these top dog neuro's is that these twitches, the fatigue, the tremors, cramps, buzzing, rippling, thumping and so on we have is BENIGN. The other single common factor is that once we calm down and start to relax a little, the twitches and symptoms subside, so PLEASE don't stop enjoying the things you enjoy to stop something that in NO WAY is going to harm you or jeopardize your health. So we twitch.. big deal. Don't let something as little as that get the best of you! Enjoy life. Quit dwelling on the twitching. Get out and do the things you like. NO one has died or been crippled or has been incapacitated by these BENIGN twitches.. NO ONE, and you certainly aren't going to be the first. Don't get me wrong, it took me almost 2 years to figure that out. It IS hard and it DOES take time, but rest assured, you will be fine. :)
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Postby tlotoxl on October 8th, 2002, 12:16 pm

I'm in no position to endorse or refute Arron's suggestions medically, but I have to admit that I do the exact same thing. I like having a drink with my friends now and again and unless evidence comes to light that it will worsen my wealth considerably, I don't think I'll be giving it up anytime soon. Especially since I live in Japan, it really isn't very easy to have a social life without drinking. And why would I want to, anyway? I love the taste of beer, red wine, sake and shochu.

I do make some effort not to get too drunk -- well, I make that effort normally, anyway -- but I make an extra effort not to suffer from a hangover because I really hate having amplified twitching sessions the next day. Still, if I can't unwind every once in a while with some wine and some karaoke....

Thanks for the post, Arron.
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twitching all over

Postby ro dash on October 8th, 2002, 1:35 pm

Arron-I read your reply and I wil try to take your advise. I have wasted so much of my time searching the internet for answers. I have yelled at my kids so much because the twitching was driving me nuts. I have not talked to my husband at times because he didn't ask me how I was that day. I have yelled at my family for not understanding what i was going through. I just want to get on with my life and forget this twitching, crawling sensation on my leg, etc . I spoke to a therapist last night and I thought she was helpful in the sense that she was someone who didn't know me. She said the twitching has become an obsession, which seems like it has for most of us. She was going to send me some progressive relaxation techniques to try and maybe it would releave some twitching. She cant tell that I am very tense and maybe I need to losen my muscles. I will try what she has suggested and i am going to get a massage and see what that does. I really appreciate your input and everyone elses. Speak to you soon. Roe dash[/code]
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Postby Arron on October 8th, 2002, 10:48 pm

I am glad to hear that none of you that posted after my last words of "my" advice are seeming to quit enjoying life. By no means did I mean to drink 'till you're drunk", or drink 'till you have a hang-over the next day". What I meant was if you enjoy a glass of wine with dinner or a beer or two after work, (or a Margarita like me), please don't stop doing that on account of being afraid your twitches will get worse! The twitches are benign. Yes, to newbies they arew scary but what makes them scary is the small amount of info you have been misled into believing that twitches and ALS go together... they don't! Well, OK, they do BUT they are entirely different kinds of twitches and like I said, I have read tens of thousands of pages, posts and so on and have spent thousands of hours scouring the medical world, medical professionals (friends of mine) and the internet learning about BFS and ALS and NO ONE has had BFS symptome turn into ALS... NOT one single person. I have only seen one or two posters (first time posters on other web sites) that actually ended-up having ALS, BUT their symptoms INCLUDED loss of hand control and REAL weakness, so it wasn't anything like BFS at all in the first place.

What I'm getting at here is please don't over analyze this stuff. It is benign and will not hurt you. What hurts us is first finding out that twitches are associated with a terrible / fatal disease and in reality, OUR twitches are nothing like that at all. Peoploe twitch for years and years and never even know about ALS, so they never got worried. It is the lack of knowledge that scares us (not putting anybody down at all). I wa scared too, for almost 2 years! I too couldn't talk to any of my family about it. They all thought I wa snuts! OK, well... I am nuts, so what else is new... :-) But it wasn't until I read (and was grossly misinformed) that constant twitching means ALS... WRONG!!!! Please don't lose precious time in your life or with your kids or family over this crap like I and so many other misfortunate BFS'ers have done. I (and we) are here to help newbies understand to trust their doctors and EMG results and so on that this stuff is benign and nothing to be afraid of and certainly nothing to make you stop enjoying your glass of wine or cold beer when you like one. If your twitches increase the next day, so what? So do mine and just about every other person with BFS, and we are all still here and totally healthy. If you lkike chocolate, have some. If you like coffee, have some or switch to decaf or half regular and half decaf if it makes you feel better. It's all good :-)
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Postby Davidd on October 9th, 2002, 8:27 am

I agree with what Aaron has said...however, as a new person with twitching (2 1/2 months) I have had a lot of trouble sleeping and am in the process of coping with that. This is why I have given up caffeine altogether and limit alcohol to once in awhile. I am seeing a sleep specialist who has recommended that I do this...

I find that since I am not used to the sensations, they tend to keep me up at night...and then when I don't sleep I feel even worse the next day. I don't worry so much about it, but the sensations are so annoying that it drives me crazy at times.

I guess if you've had these for 2 years, it's easier to ignore them. However, for me, I'd rather temporarily give up certain things that makes the twitching worse. I hope to one day be able to post messages like the one Aaron did...and it gives me hope. However, for the time being, I shall remain a sober-un-caffeinated individual!

--David
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Postby Arron on October 9th, 2002, 10:07 am

Hey, whatever works best for you. Everyone is different. I have had sleep disorders for a long time myself and have had to give-up caffeine and drinking at night too. I was able to over come that pretty much over the years, although I still do get the occasional restless night and I still have to be REALLY tired before I can actually fall asleep. I just meant don't let the twitches or basic BFS symptoms keep you away from enjoying thgings. Sleep disorders are not consistent with BFS and you have to do what you have to do the remedy the problem. If you are anxious or stressed about this BFS stuff, it will certainly cause sleep problems. been there, done that. Didn't sleep but maybe 1 hour a night for weeks on end and man was I a mess! Hang in there. it will pass and you WILL overcome it and start getting more sleep as time goes on. That's "my" opinion anyway becaue I speak from my own experiences as well as what other's have said too... :-)
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PLENTY OF TWITCHING

Postby g007one on December 7th, 2002, 8:24 am

I TOTALLY KNOW ABOUT THE NON STOP TWITCHING.I TWITCH CON STANLY EVERYDAY NOW FOR ALMOST2 YRS. I REALLY NOTICE THE TWITCHING WHEN I WAKE UP IN THE MORNING. I HAVE THESE HIT AND RUN TWITCHES, LIKE MY WHOLE BODY IS TALKING TO EACH OTHER TO WAKE EACH MUSCLE UP...THIS IS VERY STRANGE, AND I HAVE NOT HEARD ANYONE WITH THE SAME SYMPTOM....EVERYTIME I THINK IT MIGHT BE SUBSIDING I WILL ET A HOTSPOT THAWICHES FOR DAYS ,LIKE MY FOREARM , SHOULDER, ETC.....I KEEP FEELING LIKE THERE IS SOMETHING MAJOR WRONG AND THE 5 NEUROS I HAVE SEEN ARE IDIOTS.I JUST CANNOT COMPREHEND HOW THE MEDICAL COMMUNITY DOES NOT HAVE AN ANSWER FOR A SYNDROME THA MANY MANY PEOPLE HAVE....I AM STARTING TO BELIEVE IT IS FROM OUR FOOD OR WATER SUPPLY. I BELIEVE MAYBE PRESERVATIVES IN FOOD OR SOME CHEMICAL REACTION IS RESPONSIBLE. I AM A BODY BUILDER AND WORK OUT 6 TIMES A WEEK AND MY DOCS SAID IT WAS FROM NOT STRETCHING OR I NEED MORE SUPPLEMENTS BECAUSE I WORKOUT HARDER THAN THE AVG PERSON , SO MY BODY NEEDS MORE VITAMINS..OH, BY THE WAY MY INTERNIST SAID THAT BENIGN FASCICULATIONS YOU ARE BORN WITH, YOU JUST DO NOT WAKE UP ONE DAY AND TWITCH.HE SAID I SHOULD BE TESTED EACH YR FOR ALS, BECAUSE YOU DO NOT ALWAYS HAVE WEAKNESS IN THE BEGINNING.HE SAID IT CAN TAKE YRS, DEPENDING ON YOUR HEALTH ETC
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Postby Arron on December 7th, 2002, 10:51 am

g007one; you said: "I HAVE THESE HIT AND RUN TWITCHES, LIKE MY WHOLE BODY IS TALKING TO EACH OTHER TO WAKE EACH MUSCLE UP...THIS IS VERY STRANGE, AND I HAVE NOT HEARD ANYONE WITH THE SAME SYMPTOM".

Hello?????????????? Where the hell have YOU been? Never heard of hit and run twitches or one hit wonder's? It's only in about every thread on this web site and it is VERY common with BFS and has ABSOLUTELY NOTHING to do with anything even remotely related to ALS.

Who ever trhat doctor was that said to get tested every year is a certified QUACK! Are you going to believe that moron over all of your neuro's? If you do, then you are just as much a quack as him and maybe you should send me a really big check for these magic cosmic acorns growing in the ferry tree out front that will cure your twitching! get real and READ what EVERY other person has gone through, No ALS from one sigle person yet. I mean, have you seen anyone on here come down with ALS yet? Nope, and I can guarantee that, because there hasn't been ANY symptoms posted on this web site yet that even resemble ALS yet, including yours!
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Postby Nole on December 8th, 2002, 4:51 pm

NO WEAKNESS = NO ALS. ALS is a horrible disease that progresses quickly. If you had it you would have profound weakness and you would twitch in one spot until that muscle died. You would not be able to work out like you do and you would not have wide spread twitches all over. Whoever that doctor is, they should defintley get a clue. Believe in your neuros, it sounds like you have BFS. Learn to except that, stop thinking of the whatifs, and live your life. Once I started to stop analyzing things and wondering what was wrong with me my life has returned to normal. Yeah I twitch, who cares, there have even been a few days where I have not twitched at all. I think thats great and shows that I am getting better. If I had a neuro disease I certainly would not be improving. Relax and live your life, and just a suggestion, stay away from the doctor that gave your that info on getting checked every year. What a crock od *beep*.
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Postby Arron on December 8th, 2002, 8:12 pm

I second what Nole just said!
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Non-Stop Twitching

Postby Rocky on March 4th, 2003, 12:28 pm

Hello Ro,

Just to give you a little background about myself, I turned 34 years old today and I have been dealing with BFS for 16 years. I experience fasics all over my body. My first twitches started after being robbed, stabbed, beaten and left for dead on a NYC street. I was just a kid. While healing from my injuries I started experiencing twitching in my triceps muscle. For many years I kept this to myself as it progressed throughout my body. I think I cried every night for a month straight at one point. When I could not take it anymore, I told my mother and she sent me to see a neurologist. That is when I was first diagnosed with BFS. I was given I medication called Buspar, which did not help me.

FAST FORWARD---------->

Today I live in Virginia with my wife and two children. I have seen many doctors that could not do anything for me. So I decided to do something for myself. I have researched this disorder and learned that there are a number of things that we can do to give us some relief. NUMBER ONE - (Very, Very Important) Do not allow your mind to tell you that there is something wrong other than the BFS!!!!!!!! If you worry, you will not stop twitching until you stop worrying. Number Two - QUIT DRINKING ALCOHOLIC BEAVERAGES! NUMBER THREE - Ask your doctor about a medication called Neurontin. (It has helped me) Number Four - Do Not Worry About Anything. Number Five - Exercise, drink plenty of water and get plenty of rest. Number Six - At All Cost, try your best not to get sick and use cold medications that make you drowsy like Night-Quil. I have noticed an increased level of nerve excitability following the use of such medicines. I am not a doctor or a medical professional and you should always consult with your doctor first, however I can almost guarantee that if you take my advise on the things I listed above, you will at the very least enjoy some relief from these miserable twitches.

I hope this helps you,

Rocky.
Be Strong!
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No Dispute

Postby Rocky on March 4th, 2003, 12:46 pm

I am posting another reply because I did not read other replies before posting mines. I must say that I am not disputing anyones method in dealing with this disorder... The things that I mentioned are things that I do and don't do to help me deal with this syndrome. I hate to twitch and I am unable to deal with it or ignore it as good as others, so therefor I have to take measures to decrease the twitching in order for me to relax and enjoy life. But I must say that I agree with the others too, so you must decide what works best for you and apply it accordingly.

Thanks again,

Rocky
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