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: Diet

If you take medication for MC you don't need to be as careful about your diet. Everyone should watch their intake of foods high in sugar just because it can lead to diabetes. Salt is fine unless your doctor says to eat less. If you go to "return to website" above and scroll down to the link on diet there are lists of foods to include and avoid.

I'm glad the carbamazepine is working for you - hopefully you can be more involved in sports now!

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Diet

Spain:

Most people with potassium sensitive myotonia have a sodium channel myotonia. Becker MC is a chloride channel myotonia, so unless you have observed that potassium worsens your symptoms, I don't see any reason to limit your intake outside of what you usually would.

There are many mutations that can cause MC and so there is a lot of variability in the symptoms and what worsens them. I've tried all kinds of diets and don't see any effect on my symptoms one way or another except for the fact that a reduced calorie diet seems to make it worse and I think potassium helps relieve some of the painful cramping I get.

Type of Myotonia: Becker

Country: USA

Re: Diet

Because of the numerous emails I get from people with confirmed Thomsen's and Becker's MC who have improved on a low-sugar, moderate potassium diet, I feel that it's always worth a trial.

But as I mentioned, once you're on medication for myotonia it's probably not going to have as noticeable an effect, and if the medications cause potassium excretion then following a low potassium diet can even be dangerous. The goal is to keep insulin levels from spiking and from increasing serum potassium too rapidly. Both of these affect chloride channel conductance.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Diet

Jan:

I agree. It's worth a try! And limiting sugar usually has more positive than negative effects regardless. I have definitely noticed that my concentration is much better when I limit my sugar intake. One reason I might be able to tolerate potassium could be due to the fact that, well, let me put it this way, I have a difficult time keeping hydrated. So I might just excrete it a lot faster than most people.

We really just have to experiment a lot with the aspects of our lifestyle we have control over. Lately I've been experimenting with ways to improve my muscle stamina because I'm starting school again soon and it's really become difficult for me to keep up. I even tried holding ice cubes in my hands after hearing about a hand cooling device which was found to reduce muscle recovery time and increase strength, but no such luck.

Type of Myotonia: Becker

Country: USA