Welcome, bex!

I also have Thomsen's and the thing that has helped me most is watching my diet. I have a page about it that you can access from the website (link is above). As long as I follow that and avoid environmental exposures I do great.

As far as medications, the most effective for the most people seems to be mexiletine or Mexitil. You do need to get an EKG and be monitored for side effects. It's basically an oral form of lidocaine. It's best to start with a low dose and work up.

The other medications that have been used for myotonia are acetazolamide (Diamox), phenytoin (Dilantin), carbamazepine (Tegretol), flecainide (Flecaine), lamotrigene (Lamictal) and Quinine Sulfate. They all have potential for side effects, some quite serious. Since MC is not progressive and is not life-threatening, many of us choose to do what we can to minimize the stiffness in other ways.

Age shouldn't be a factor, although hormones, whether your own or hormones you're exposed to in your environment, can worsen the stiffness. So can certain medications, especially inhalers and statin drugs. The worst for me are pesticides and herbicides.

Let me know if you have any questions about the diet. Since I wrote that I started taking the amino acid supplement Acetyl-L-Carnitine every day and that has allowed me to tolerate a small amount of sugar without getting worse.

Jan

Type of Myotonia: Thomsen's

Country: US