Almost cure remedy

Information about how to manage or reduce the severity of BFS symptoms

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Almost cure remedy

Postby Floater on April 26th, 2004, 5:15 pm

Well heres what i take and seen a substantial improvement of my symptoms.... i suffered from constant twitching, pain in my legs feet and hands,,, tingling and buzzing in calfs, feet, and hands,,joints popping and cracking and being super tired and rundown.. now the symptoms have cleared ...especially the pain buzzing and joint popping...i hardly have a twitch anymore and i have energy for the first time in almost a year and a half

MY REMEDY

2mg of Klonopin in the evening
200 mg of SAM-E twice a day
1000 mcg of vitamin B12
50mg of vitamin B6
800mcg of Folic Acid


I started taking sam-e and the vitamins because my liver enzymes have been elevated for a year...sam-e detoxifies the liver by nourishing it...and its very important to take b12 b6 and folic acid to keep the sam e from ever turning into toxic homocystiene.. within a month my liver enzymes returned to there normal range...now i take 2mg of klonopin in the evening...its quite sedating and gives you the best night sleep ever...but more important... at that high dose it really suppresses the BFS...even into the next day... i feel great and have my energy back this is the most normal ive felt in a year and a half of this bfs crap....YEAH KLONOPIN

p.s. ive been taking klonopin for a while...but it was a low dose .05 to 1 mg....it worked ok... but bump it up to 2mg and youll feel the difference..

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Postby RexM on April 26th, 2004, 6:41 pm

Is Klonopin a prescription drug?
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Postby Floater on April 26th, 2004, 7:15 pm

yes klonopin is a prescription anti seisure benzodiazapine... its also used to treat anxiety. most neuros will put you either on nerontin(which did nothing for me) or klonopin for bfs :D
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benzodiazepine is addictive!

Postby Bradford on April 26th, 2004, 8:22 pm

Hey guys becareful with this stuff because my doctor and pharmacist has
warned me about addictions that can develop from this classification of drug.

I'm not convinced that it is an anti-siezure mediciation more than it is used to treat anxiety disorders and panic attacks. Other generic names for this drug include Xanax.

In fact the drug warning sheets that usually accompany medications warns that taking this medication longer than prescribed MAY be habit forming. I'm looking at the sheet right now.

I've taken this stuff and it does a good job in supressing the central nervous system and has a calming affect. In fact, I've had some pretty good sleep induced from the medication, but I haven't found any correlation between this drug and reduced muscle fasciculation. Sorry that I can't second the motion per se.

I do notice however, that increasing Vitamin E has had an effect on my fascics and the nice thing about Vitamin E is that it doesn't have a toxicity level like other vitamins.

Right now, my neruo has me on Carbatrol which is Tegretol revisted but with reduced side effects and with multi-timed released benefit over 12 hours. I, including my wife can verify that it has induced some pretty
sound sleep in me.

All said, I think the sleep is the best remedy for everything which for most BFS associates is hard to come by wouldn't you agree?
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Postby marieclare on April 26th, 2004, 10:36 pm

I just started Tegretol--50 mg at night--it has helped a LITTLE--I don't think it is habit forming like the benzo's---I may bump up to 100 mg--how much do you take?
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Postby TheyDon'tBelieveMe on April 27th, 2004, 4:09 am

You have to be careful with benzodiazepines like Klonopin. When the brain becomes accustomed to benzos, it stops doing stuff it would normally do on its own. So, withdrawal can be quite an ordeal. The nervous system loses its brakes.

I'm not saying not to take benzos, I'm only saying to be careful of withdrawal syndrome. Twitches and every other neuro symptom intensify during benzo withdrawal.
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Carbatrol dosage

Postby Bradford on April 27th, 2004, 12:42 pm

I'm taking 200mg at night which is considered a low dosage.

Carbatrol is the same as Tegratol, but has time released beads that help keep constant levels in the blood by releasing a bead every 4 hours or so.
Because it is an anti-seizure drug this is important for people with those
types of disorders and they usually are taking higher dosages.

The adverse affects of these medications is that they can cause some
anomolies with the CBC (blood counts) therefore if on this medication for
a long time, periodic blood work is usually done, but as you pointed out,
it doesn't have the "addictive" effects as the benzo's

The side effects that I've experienced from the medication is a bit of
drowsiness which at bedtime, is great because I then sleep pretty soundly.
During the day, the drowsiness is very manageable. Been on the med now for about a week and its hard to say if the effect is beneficial or if the sleep I'm getting from the med is benefiting me?

I'll try to keep this site informed for any benefical changes.
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I can attest

Postby KimE on April 27th, 2004, 1:04 pm

Though twitching was never miy biggest SX, when I started to take Xanax my twitching just about came to a screeching halt.

And I starting sleeping through the night and not waking up with a panicky feeling as I had been.

I still have all my other crap to deal with though.

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Postby Floater on May 28th, 2004, 10:20 pm

i like xanax....it does help.. i just wish there was a drug that would work as an effective treatment that would eventually cure....but i think that will never happen..

if they could find the cause then theres hope for a cure
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dilanitin

Postby terryg on June 8th, 2004, 7:34 am

I ran into this web site by accident looking at Isaac's syndrome. http://www.remarkablemedicine.com/

I thought I saw this as a topic a while back I do not remember if anyone has tried it or the adverse effects. Any remarks would be appreciated.

Take care
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Postby garym on June 8th, 2004, 10:42 am

Terry,

That is an interesting article. I'm going to do a little research into that one.

Thanks,
Gary
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Postby thetwitchkid on June 8th, 2004, 12:53 pm

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Postby Arron on June 22nd, 2004, 2:07 am

Just remember, benzo's are for a short fix to a problem, be it an anxious time in your life, an anxiety attack or whatever.

I have been taking Ativan for 2 decades on and off, and yes, it "can" be habot forming, but so is alcohol, and really, have you ever thought of not having that extra glass of wine or two at Thanksgiving dinner because your neighbor is an alcoholic? You have to take things at face value and use things to YOUR advantage. Just because you see someone that is a bonafied "drunk" doesn't mean you shouldnlt have a few extra glasses of wine every now and then, just like when you NEED a few doses of medications, that's what they are there for, to HELP you.

Common things like Nyquil "can" be habit forming too, but do you freak-out about taking it when you have a bad cold? Just because a warning labes says something, doesn't mean you shouldn't take it. Go look at the warnings on an over the counter Advil bottle. It says "can cause a body to go into shock and in some cases, death!" Ever see a warning for regular aspirin? It also has SERIOUS side effects. MUCH worse than being addictive if you take it for long periods of time. Again, you have to take things at face value and be an "adult" about it and do things in moderation.

I sometimes take Ativan 3 or 4 times a day for a week or two solid when I am really stressed-out, and then I might not have another one for 6 - 8 months or so, and I am certainly not addicted. Everyone is different and everyone reacts differently to meds, so you have to know YOU before you can decide what is or isn't "good" for you. before I was prescribed Ativan, I used to be prescribed Valium, and that is a another addictive drug, but when you need one and you keep your head about taking them, there should be no problems at all, and I never had a problem with it either.

Also, on BFS, just becaue someone has something they claim works for them, certainly doesn't mean it will work for you, especially when it is a bunch of vitamins and stuff like that.

We have been on this board for quite a number of years now and have studied and tried EVERYTHING under the sun, including some neuro's as well, and NOTHING is a "cure" for BFS other than simply calming yourself down and not dwelling on it. Once you master that, and get on with life "as normal", and you quit dwelling about ALS, (which is something none of you have), and you move-on, the BFS symptoms (in 90% of the cases) WILL subside and almost stop.

This isn't my first day here, and I am trying to help YOU with MY experience, and with MANY other's "collective" experiences as well that some of use have in data bases, so use it to your advantage and do NOT go trying ANY new drug or vitamin concotions without first talking wiht your doctor, because many herbs, "suppliments" and even vitamins can cause SERIOUS heath peroblems if taken in high doses or in conjunction with other neds, in fact, it can even cause death in some incidences, so PLEASE... be careful, and remember, BFS does have a "cure".. it's called not dwellibng on it and moving-on with life, not some "miracle vitamin concoction" that has been tried over and over again in the past with no true results other than the placebo effect for a short amount of time.
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Postby Greata on June 23rd, 2004, 9:15 am

I do not mean to be difficult, but if after a certain amount of time, one still needs to take meds to sleep, relax, function etc....have you really moved on? Meds clearly help many people, but regarding BFS, time should play a bigger role in helping one believe they are OK.
My suggestion for the newer twitchers , is allow 6-8 months to pass, if no changes occur regarding your reflexes, strength etc {and your EMG's are normal}, see if you calm down naturally...
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Postby Arron on June 25th, 2004, 2:53 am

Some people are just "anxious" and can't simply relax "naturally" on their own. Meds and technology are there to help us when in need, and that's what it's all there for, so it is silly not to use something that can help you get back to "normal", and why take a long term SSRI when you only need a littl ehelp every now and then. bnesides, if one takes an SSRI, it takes weeks for it to start working properly, and in most cases, that is WAY too long to wait for relief.

Kind of like those religious freaks that let their kids die KNOWING that the medical technology that we have can help, but they want "nature" to take it's course and for "god" to do his miracles instead. It doesn't work that way though. Sometimes there is no "natural" remedy, and you need outside help to function "normally" and to "move-on". As I said, it is only for temporary use, and for several decades, I have had the luxury of getting temporary use when I needed it. SSRI's don't like me, and not taking anything doesn't help me either. No sleep means no productivity in what I do to make a living. Being aboe to sleep, stay calm and "function" IS a form of "moving-on" rather than sitting in bed, all depressed and being literally, worried sick over something you don't even have.
Been there, done that, and I KNOW how much is sucks.
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