I extremely appreciate your reply.
I will follow your advices and see how my body reacts. Would be amazing to observe how things change and find out ways to help us cope with Myotonia and learn more about our bodies.
Thank you so much for sharing your knowledge.
Much love and respect.
Nada
Just read your responses to periods and VBAC. I wish this site had been around years ago. I was officially diagnosed 23 years ago when my symptoms became much worse with pregnancy. prior to pregnancy and afterwards I also had worsening of symptoms at ovulation and menstruation. Tried to convince the doctors that there was a link between hormones and MC symptoms and they pooh-poohed the idea. One thing that did help was being treated by a kinesiologist (sp?)with adjustments and muscle manipulations and with a homeopathic supplement to increase liver function. That seemed to help even out the hormones. Old age helps too. Now that I am menopausal, my MC symptoms have lessened to the degree that I often forget I have it.
Thank you Lena for sharing that. I agree with you about hormones and liver too. Here in Italy doctors only told me to try Mexiletina and stop. When i tell them that food change myotonia they don't believe me. I think there's connection between stomach/intestine and MC. Months ago when my stomach started getting worse for taking supplement with sorbitol/mannitol (sweeteners) my myotonia got really worse. I think there's more than mutation....so we can explane people with mutation without symptoms like my mother.
Sorry for my english.....i hope you understand. Mavi
You are doing much better in my language than I would do in yours so do not worry. About the same time as I went menopausal, I was diagnosed as pre-diabetic. I cleaned up my diet, took out the sugars, and lost 30 lbs. This may account for some of my improvement of symptoms too. I know that years ago I read something about sugars being bad for myotonia. And for diabetic control, I know that sugar substitutes are also bad for your body in terms of the insulin and blood sugar reactions. I do not know if these are triggers but it might be good to eliminate them from the diet. Anyone else want to weigh in on this?
As long as I follow this I don't even notice that I have myotonia. That's after severe stiffness earlier in my life. The only thing now that sets it off is exposure to pesticides and herbicides or medications that affect electrolytes.
I did find that taking the supplement Acetyl-L-Carnitine allowed me to tolerate a little sugar occasionally. It is often prescribed for diabetics because it helps with insulin resistance and peripheral neuropathy. You can get it at any health food store.