So I've always searched for answers about MC and I finally came across this forum. First, I just wanted to put out some of the things I've found out for myself. One being alcohol decreases my symptoms to almost nothing while consuming, but the next day my symptoms feel almost like they've doubled. This I believe is the sugar content, but I also believe it has a lot to do with my hydration level. I find consuming copious amounts of water helps with my symptoms on a daily bases.

Now for my wondering...my brother and sister both have beckers as well, and my brother takes 1300mg of Taurine daily and believes it alleviates some of his symptoms. Is there any truth or logic behind this?

Second, I've read that medications for various disorders can help with MC. One which stood out to me was ADHD. Can Ritalin reduce symptoms?

Also can having MC effect other neurological patterns resulting in the development of other disorders, such as being bipolar, schizophrenic, Tourette's or having ADHD? These are just some related disorders for medication recommendations. And if you do comment and don't mind saying if you have any other disorders in which your medication laps, I thought it might be interesting to see if there was a link.

Sorry for all the odd questions. And they maybe way out there, but I've just been through about 50 different sites leaving me with more questions then answers.

Type of Myotonia: Beckers

Country: Canada

Anthony,

Most medications that are prescribed for MC are used to treat epilepsy because they affect the ion channels. The most common are mexiletine (Mexitil) which seems to be the most effective for the different types of myotonia, and carbamazepine (Tegretol) which I don't recommend if something else is available because of the potential side effects related to depression and suicidal tendencies.

Some of the older medications used for MC are phenytoin (Dilantin, also used for eplilepsy), acetazolamide (Diamox), and Quinine Sulfate.

Because Ritalin is a central nervous system stimulant (like caffeine or methamphetamine) it could have disastrous results for someone with MC. I don't know where you read about it being used to treat myotonia, but I would not even think about that one!

Taurine is a proven treatment for myotonia. The studies were done in Italy by Dr. Camerino and her team. 1-2 grams per day can give significant improvement. It is also used to treat certain types of epilepsy.

I don't tolerate large amounts of water, but several of us have found that skim milk helps with symptoms, especially recovery from exercise. This is probably because it has a good mix of electrolytes, especially phosphorus, while also being hydrating. Drinking too much water can deplete sodium and that may make myotonia worse, so just keep an eye on muscle cramping and headaches which would be the first signs.

I can get very quick relief from chewing red pepper flakes or eating salsa or hot sauce because capsaicin stimulates the chloride ion channel. The effect seems to be diminished if you do it constantly so that's kind of my rescue remedy. I also use licorice root extract (one capsule a day) which causes potassium excretion. That may not be good for some people who tend to get a lot of weakness with the myotonia. But I get plenty of potassium from other sources (including milk) so for me it just seems to keep it from getting too high.

Myotonia Congenita is a defect in the skeletal muscle. It does not affect the chloride ion channels in the brain so it would not be a factor in other disorders like bipolar, schizophrenia, etc. However those are fairly common in the general population, so it's certainly possible to have both MC and a mental illness.

If you are looking for a medication, I would certainly give Mexitil a try. You need to see a cardiologist first and be monitored, but many people have used it safely for long periods. I would only use the lowest dose that gives relief because it can have some serious side effects.

Since the taurine works for your brother, that might be an even better solution for you. I believe Dr. Camerino's studies used up to 5 grams per day. New York University's Medical Center states that 2 grams 3x a day is a normal therapeutic dosage. That's a lot...I would suggest trying a 1-3 gram range which should be effective without being excessive.

Let me know if it works for you. I would love to see other researchers do an updated study.

Jan

Type of Myotonia: Thomsen's

Country: US