Hi everybody,
I'm suffering from a mild form of myotonia (PAM/myotonia fluctuans) which is caused by a sodium channel (SCN4A) mutation. I'm able to manage my daily life mainly without drugs however during sport activities (especially endurance sport) like running or playing soccer breathing and smooth muscle movement gets harder as usually
As I read a lot of satisfying experiences with mexiletine I really would love to give it a try. I mean only for endurance sports to see if the symptoms disappear or at least improve. On the other hand I have big concerns if the combination of mexelitine and endurace sport is safe because of the fact that mexiletine is a anti-arrhythmic drug? And i'm also wondering if it's ok to take a single mexiletine dose only when needed?
What's your opionion? Maybe someone already has experiences which fit my issues?
Thanks!!
Type of Myotonia: PAM / Myotonia fluctuans (SCN4A)
We've had a couple of people here use mexiletine occasionally before sports events, but that's something that would need to be monitored and approved by your doctor. Not everyone with a sodium channel mutation does well with mexiletine and I don't think it's available in Germany.
A better option for you to discuss with your doctor might be acetazolamide. I live at a high altitude and it is often prescribed for people who come out here to go skiing to help prevent high altitude sickness, so I know it is considered safe along with physical exertion. The only complaint I hear for short-term use is that it makes carbonated drinks taste funny (metallic taste). With long-term use it can cause some tinnitus, but it usually stops as soon as you quit taking it.
If you want to try an alternative to drugs the amino acid L-Taurine has been shown to help myotonia. I don't remember if it was both chloride and sodium channel myotonias. I'll try to find out. The dose would be 1-2 grams. I find that Acetyl-L-Carnitine really helps me with endurance and reduces stiffness.