Hello all... I was just watching a commercial talking about Energy drinks... They stated that there is Taurine in them... I remembered reading on the forum that Taurine something they use for MC.... What do you all think about this? Would it be proper for a child to take taurine? Is there a medicine called Taurine or is it just an ingredient in Energy drinks? Thanks for any replies....

Type of Myotonia: thomsen s

Country: Lebanon

This is from the WebMD site:

"Some people take taurine supplements as medicine to treat congestive heart failure (CHF), high blood pressure, liver disease (hepatitis), high cholesterol (hypercholesterolemia), and cystic fibrosis. Other uses include seizure disorders (epilepsy), autism, attention deficit-hyperactivity disorder (ADHD), eye problems (disorders of the retina), diabetes, and alcoholism. It is also used to improve mental performance and as an antioxidant. Antioxidants protect cells of the body from damage that results from certain chemical reactions involving oxygen (oxidation)."

This is the link:

http://www.webmd.com/vitamins-supplements/ingredientmono-1024-TAURINE.aspx?activeIngredientId=1024&activeIngredientName=TAURINE

I note that it is used in the treatment of epilepsy but I'm not sure what its' role is, perhaps Jan can supply that information along with how it might affect someone with MC?

Type of Myotonia: Becker's

Country: England

Julie,

L-Taurine is an amino acid that has properties similar to sodium channel blockers used to treat epilepsy and myotonia. I have mentioned it several times on the site as a possible alternative treatment for myotonia. A researcher in Italy told me that they were successful in using it as a treatment for myotonia. Some studies were done on myotonic muscular dystrophy, but it would work in the same way for myotonia congenita.

For a child you could try giving 500 mg a day to see if it makes any difference. If you go higher than that dose, which you may need to do for the best effect, then I would encourage you to have your doctor test serum taurine levels to be sure she's not getting too much. Some people have metabolic issues with certain amino acids. It's certainly safer than something like mexiletine.

I would not recommend energy drinks for children because of the other ingredients. You should be able to find L-Taurine in a health food store.

Here are some studies for you:

The treatment of myotonia:
Evaluation of chronic oral taurine therapy


The Effects of Taurine on Pharmacologically Induced Myotonia

Decreased taurine concentration in skeletal muscles after exercise for various durations
(this one doesn't specifically deal with myotonia, just with muscle cramping from exercise, but it does reference one of the articles above)

Perhaps those with mytonia who get severe cramping are actually experiencing a taurine deficiency since others have no cramping at all.

Beth Israel Deaconess Medical Center which is a teaching hospital for Harvard Medical School has this information about taurine on their site:
Taurine

They say up to 3 grams per day is considered safe for adults and the therapeutic dose for treating something like congestive heart failure is even higher (6 grams). However they do give a caution for children and pregnant women just because studies have not been done to determine a safe dose.

Jan

Type of Myotonia: Thomsen's

Country: USA

I am thinking of giving taurine a try as I am really suffering with my MC since coming off the mexitil and my neurologist has not yet called me in for a consultation.

On reseaarching it I noted that it is used by a lot of athletes to help build up muscle mass, something that I wish to avoid obviously, but I believe that this will be a product of the dosage?

In one article there was a mention of taurine catalysing the uptake and release of calcium ions, but no mention of chloride ions.

Taurine is not very expensive in Britain, 100 x 500mg capsules costing on £7, which makes it an affordable experiment for me.

If I go ahead and buy some capsules I'll post the results on this site as I know others might find it interesting even if the results are negative.

P.S. Sorry for hi-jacking the thread, which initially concerned taurine and children, but it geve me the original prompt to explore this avenue.

Type of Myotonia: Becker's

Country: England