Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: Alternative Medicine

Also,
I've read about taurine, would it be harmful to just try? mainly for longterm use?

http://www.springerlink.com/content/t6220053gqu84pm5/

small study-

http://www.cochrane.org/reviews/en/ab004762.html

Re: Alternative Medicine

Small amounts of licorice root every day should be fine as long as you don't have hypertension (and hopefully you never will!). If your potassium levels start getting low you'll feel weak and may have some abnormal heart rhythm.

Jan

Re: Taurine

Theoretically taurine should help myotonia because it decreases extracellular potassium and increases intracellular. That should stabilize the membrane and allow the cells to repolarize faster.

I tried taking it years ago and can't say that I noticed much difference, but maybe I didn't take enough. I think I just used one capsule a day and it may take more than that for a therapeutic dose. It certainly can't hurt to try and we would appreciate the feedback.

The recommended therapeutic dosage for taurine is .5 to 4 grams per day. I think the capsules are usually about 500 mg so you could safely take several.

Jan

Re: Alternative Medicine

ok i think i might try that... start 1 or 2 capsules a day?

Re: Alternative Medicine

I would say 2-3 capsules a day since one didn't seem to have much effect. I'll see if I can find out how much they used in the trials for myotonic dystrophy.

Jan

Re: Alternative Medicine

ok well i got the pills the are 1000mg...so i should take 2?

also i noticed that it had other ingrediants sucj as Gelatin, MCI, Silica, Magnesium Stearate

Re: Taurine

Since they're 1000 mg maybe start with one and see if you notice any change, and if not go to two.

I checked lots of articles and couldn't find anything on recommended dosage, so I guess you just have to experiment. I would suggest taking it before bed in case it makes your muscles really relaxed at first or lowers your blood pressure.

I'm glad you brought this up again - I only took 500 mg and didn't stick with it very long so maybe if I had increased the dose I would have seen more results. Someone wrote a post a while back about an energy drink that helped her myotonia and it also contained taurine.

Let us know how you feel -

Jan

Re: Re: Taurine

Thanks to you both for the info.

Adam