Jan's Diet for Myotonia Congenita

Note: This information is for educational purposes only.  Consult with your doctor before starting any new diet or exercise program.  Also check with your doctor or pharmacist to see if any of the medications you are currently taking could affect levels of potassium and blood sugar.

This diet is based on my own experience and has made an amazing difference in the severity of my symptoms.  However it is a day-by-day regimen and if I eat foods that are listed below as triggers, I will be stiff within hours.  It takes a great deal of discipline and will power to stay on such a strict diet, especially when everyone around you is eating the "forbidden" foods.

I could not tolerate the medications available for reducing myotonia, so I really had no other choice if I wanted to be able to function somewhat normally.  If you are taking medication, be very careful about restricting potassium since your particular drug may already be increasing potassium loss.  However it should be fine to avoid the preservatives and additives containing potassium.  Symptoms of a potassium deficiency include irregular heartbeat, muscle weakness, cramping, or flaccid paralysis (limpness); leg discomfort; extreme thirst; frequent urination; and confusion.  A blood test can be done to determine if your symptoms are caused by hypokalemia (low potassium). 

I believe anyone can benefit from restricting sugar in their diet.  It will help keep your insulin levels lower which in turn decreases the potassium ions from accumulating outside the muscle cell.  Here's a quote from the National Library of Medicine about this effect:  

The cause of myotonia congenita is believed to be an abnormality in the chloride channels of muscle cells (chloride ions are required for a muscle to relax). The abnormal chloride channels also cause an accumulation of potassium outside the cells and an activation of sodium channels in the muscle cells (sodium ions trigger muscle contraction).

When the cells have more than enough sodium but not enough chloride, abnormal repetitive electrical discharges cause a stiffness called myotonia.

By keeping insulin levels steady and avoiding sudden changes in potassium through certain foods, we are helping to reduce the activation of the sodium channels and reducing the repetitive firing of the muscle which causes myotonia.

Remember that you can't do this halfway and see any results.  I suggest trying it for 5 days - no cheating - and see what happens.  If it doesn't work, you haven't lost anything  and if it does work, it may be worth the effort to continue.


What to Avoid

Sugars:   Sucrose, white sugar, brown sugar, honey, molasses, corn syrup, rice syrup, barley syrup, pancake syrup, powdered sugar, refined sugar, raw sugar. 

This is tough!  Most prepared foods have added sugar.  Even 1 gram of sugar in a serving of bread is enough to cause my stiffness to increase (usually a slice of bread has 2-3 grams of sugar).   Because of the low-carb craze there are more products available now like zero carbohydrate bread.  Good alternatives are pastas, unsweetened crackers, unsweetened tortillas, etc. 

I don't use any artificial sweeteners, so I can't comment on how that might affect stiffness.  Theoretically it should not, but since I haven't researched this thoroughly, you're on your own to experiment with that :-)  I tolerate lactose fine, but of course if you're lactose intolerant you'll want to avoid uncultured dairy products or use something like Lactaid.  I also tolerate very small amounts of fructose, but generally avoid sweetened foods altogether. 

High Potassium Foods:  For me the worst are bananas, most apples, sweet fruit juice (I'll explain below), melons, figs, dates, raisins, prunes, grapes, apricots, rice, baked potatoes, squash and peas. 

After evaluating the potassium levels of these foods, it seems to be more than just the amount of potassium that makes a difference - many of these foods are also high on the glycemic index and can raise blood sugar quickly, resulting in higher insulin levels after meals.  Also if extra salt is added to rice or a baked potato, for instance, I can tolerate it much better.

You can still get plenty of dietary potassium in meats, grains, dairy products and vegetables. And I have found that the tart/sour fruits like Granny Smith and Braeburn apples, berries,  citrus, etc in moderate amounts have very little effect on stiffness.  Also, while I will get stiff very rapidly from something like a baked potato, I do fine with French Fries and chips. Oil tends to slow down the glycemic response to certain foods and by keeping insulin levels more even you will avoid stiffness.

Potassium Additives and Preservatives: Potassium iodide, potassium sorbate, potassium chloride, potassium nitrate and nitrate, potassium bisulfite, potassium citrate and monopotassium glutamate.  There are many others...read labels carefully.

These are often found in lunchmeats and other preserved foods like bacon and ham.  Potassium sorbate is used in dairy products like cottage cheese.  One of the worst episodes I've ever had with myotonia was on a trip where I ate eating cottage cheese several times.  I was having so much difficulty breathing and swallowing that I thought I might have to go to the emergency room, but then I noticed that label on the cottage cheese listed potassium sorbate as an ingredient.  Fortunately I was able to reverse the effect with plenty of hot salsa (hot peppers have a chemical that helps stimulate the chloride ion channel). 

Potassium iodide is another to watch for, especially in salt.  Most of us buy iodized salt but that particular form of iodine can cause problems for myotonia.  In fact the National Institutes of Health has this warning on their Medline listing for potassium iodide:

"The presence of other medical problems may affect the use of potassium iodide. Make sure you tell your doctor if you have any other medical problems, especially high blood levels of potassium (hyperkalemia), Myotonia congenita or Tuberculosis. Potassium iodine may make these conditions worse."

 I thought for years that salt made me worse, then found out it was the potassium iodide.  I now use a sea salt without added iodine and do fine.  However I carry some with me when I travel since most salt does have potassium iodide added.

Recommended Foods: What We CAN Eat

Here's a list of foods that don't seem to cause a problem with MC based on years of experimenting and feedback from others. Sometimes the glycemic index and postassium content doesn't seem to correlate because the way the food is prepared or combined with other foods (especially oils) can alter the absorption. Since we're all different this is just a guideline, but at least it will give you something to try and you can experiment from there.

Fruit: Tart/sour fruits such as berries, cherries, cranberries, citrus fruits (orange, grapefruit, lemon, etc), pineapple, tart varieties of apples. These should all be unsweetened.

Vegetables: broccoli, cauliflower, cabbage, spinach and other greens, red leaf lettuce, potatoes, turnips, peppers, tomatoes, okra, asparagus, tomatoes. In much smaller amounts I eat green beans, carrots, cucumbers, beets, onions, beans, pumpkin, squash they are naturally higher in sugar and can increase insulin levels too quickly.

Milk products: Low-fat and skim products including milk, cheese, yogurt, kefir (all unsweetened)

Breads: Breads made without sugar (Italian and other Artisan-type breads), pasta, tortillas, biscuits, unsweetened cereal, crackers, and pancakes.

Meats: All lean uncured meats are okay including pork, beef, chicken and fish. Cured meats such as sausages, lunchmeats, hams, etc usually have a potassium additive that can cause myotonia to get worse. Read the label carefully and if it is just sodium additives you should be okay, but also watch for added sugar.

Snacks: Popcorn, potato chips, French fries, pizza (try to get unsweetened dough), corn chips, sunflower seeds, almonds, pecans, cashews (avoid peanuts)

Fats: This seems to vary from person to person.  For instance fish oil supplements make me worse, but I can eat fresh or frozen fish without a problem.  It's important to get a good mix in your diet to balance smooth and skeletal muscle contractions.  Avoid hydrogenated fats like shortening. 

I hope this list is helpful...I have received positive feedback from those who have tried it.  Please e-mail me with any questions, suggestions or comments.

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