I am 44 and in good shape physically however I do feel my myotonia has gotten worse in the last 10 years. I can no longer stand in a room of people and talk without holding onto a table or a chair. I can't go down stairs without holding onto a railing. Getting in and out of the car, crossing parking lots, streets with out anything to hold onto is hard, etc. It is an overall much stiffer feeling.
All this to say I am finally thinking about jumping on the Mexiletine band wagon. I have been hesitant to take it because I would like to stay medicine free for as long as possible but I am wondering if my quality of life would be better on it. I feel the stiffness and fear of falling or something bad happening to me has caused me to feel anxious. I was worried at first about messing with my heart rate since I already feel anxious some times. But I might feel less anxiety if I could move around better and was not worried about being stiff and falling over.
One question I have: we are not suppose to have Lidocaine and yet I see Mexiletine is a form of lidocaine. How does that work? Also, has anyone else had problems with toxicity levels? I am just wondering how good it is to be taking Lidocaine every day.
Jenny, it does get to be a vicious cycle because the anxiety about getting stiffer makes the myotonia worse.
The listing of lidocaine as a contraindicated drug only applies to the local anesthetic which contains epinephrine (trade name Xylocaine). The oral form should not be a problem since it would not contain that.
Most of the people who report side effects with Mexitil tell me it's either GI problems (you have to take it with food or an antacid and most doctors don't mention that), or heart arrhythmias (rare). You would get an EKG before starting and work up the dose slowly. It is really life-changing for many people.
You can also try the amino acid L-Taurine (1-5 grams per day) or licorice root extract if you don't have high blood pressure (500-1000 mg per day). The Taurine has an effect very similar to anti-seizure medications which are often given to treat MC. Licorice root extract binds the aldosterone receptor which causes sodium retention, an increase in blood volume, and urine potassium loss. The effect is similar to taking something like Prednisone but without the more serious side effects of diabetes, cataracts, osteoporosis, etc. Corticosteroids do really improve myotonia, but they just aren't practical for long-term use.
Let me know what you think if you try the Mexitil -