Things that have helped me

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

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Things that have helped me

Postby DaveKD on August 16th, 2002, 12:03 pm

Someone has to be the first to post! Now that I have a better perspective and less anxiety after twitching for almost 1 year I will summarize what worked for me in descending order. I do not claim that any of these cures BFS.

1. Accepting that this is not fatal and that they may or may not go away completly. As you go through this period you may need the help of antianxiety meds(Klonopin or Ativan) and antidepressants as I did and still do, but I have weened myself down to a very low dosage on both. When your anxiety is out of control fasciculations go out of control and paresthesias and headaches which intern makes you more anxious. You have to break the cycle!

2. Yoga or relaxation tapes. You can get your stress level so high that you need to work it down with more than medecine(or an alternative to medecing) and your twitches will go down as well.

3. Co-enzyme Q10 and magnesium. These seem to help a bit and the are good for you heart as well as you nervous system. Maybe it is the placebo effect, but I think they help a bit and the certainly are not dangerous.

4. Laugh and keep yourself occupied and live your life!! :D
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things that have helped me too

Postby Arron on August 22nd, 2002, 12:38 am

Well, nothing so far has helped me with the twitches except staying calm. When you aren't all freaked-out or stressed-out over these little critters, they seem to subside. The anxiety can be controlled with a good anti-anxiety drug such as Ativan (my favorite), Xanax ( a popular one) and the old stand-by, Valium. Buspar is also another popular one.

Here's the deal with the longer term meds such as Paxil. usually there are bad side effects that come with these meds. Not life threatening, just the pain in the ass kind, like hot flashes, sweats, and you name it. These side effects can make you feel worse than you were before you started taking them. I tried Paxil and I was a total zombie, had slurred speech (that I was sure caused by the onset of ALS), I stumbled over my own 2 feet, had horrid hot flashes where my skin felt like it was on fire and was just in a haze all day. This is common with these drugs but in some people, they do wonders, so it is really up to the individual. The deal with long term meds is that they take about 2 weeks before they really start to do what they are supposed to do. Ativan, Xanax and Valium on the other hand, work very fast and have no harsh side effects compared to something like Paxil. Please ask your doctor before taking ANYTHING. I happen to like my Ativan and it comes-in handy when anxieties are high and symptoms worsen. It really has helped me and trust me, this BFS stuff prays on stress and anxiety. The more stressed-out you are, the worse they get. It's a vicious cycle that is hard to break. I hope that helped...
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Postby Arron on August 22nd, 2002, 12:42 am

Oh yeah, getting out and not dwelling on this helps too. get out and be around people, like at your favorite watering hole. Beer doesn't hurt either... Bloody Mary's, Alabama Slammer's, Margarita's or whatever your favorite poison is. Even my doctor said this to me, but he didn't want me becoming a lush like him.. ha-ha!! MODERATION. When you drink a little wine or beer or spirits, it does help ease the stress, which in turn calms down the twitches, but please don't over do it. That is worse than the symptoms themselves.
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Some things that have seemed to help

Postby Davey on October 9th, 2002, 5:29 pm

Here are some things that have helped me with BFS.

1. The best thing so far is getting enough sleep at night.

2. Tonic water with quinine helps with cramping.

3. A calcium-magnesium-zinc supplement. I recently began taking this and have noticed a decrease in twitching.

4. Creatine monohydrate seems to give my muscles more energy. I seem to recover faster from exercise and am less fatigued overall.

5. Regular exercise! It doesn't have to be high intensity. Just do it!
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Postby Craig on October 17th, 2002, 3:33 pm

Just curious, Dave, what are your symptoms like now compared to a year ago--have you noticed a big difference? Do they still bother you or a day-to-day basis?
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