For the past 3 weeks, I have had multiple total body muscle spasms at night. They are like seizures, really. I thought perhaps my potassium was low but that isn't it. My muscles hurt all day and are very stiff. I am on 8 tablets per day of long acting Tegretol for the Myotonia Congenita because the Mexilitene became ineffective. The neurologist wants to restart 2 tablets of 150 mg Mexilitene with 6 Tegretol in a last ditch attempt to control the myotonia. The Myotonia is bad all the time now, to the point I can barely walk anymore. If I cannot get it back under control, I will probably file for medical disability because its really hard to move my fingers and I am a computer programmer. I'm not giving up yet but I've exhausted every medication combination currently available. Maybe this last one will work.
Has anyone else had issues with the total body spasm thing? Its really terrible.
Tegretol is my least favorite medication for myotonia just because it causes so many bad side effects. Muscle spasms is one of them. You have to withdraw slowly to avoid seizures.
You're not on any statin drugs, are you? Also insulin can aggravate myotonia. My mom used the slower release - I can't remember the name.
I get muscle cramps from calcium supplements. They are usually relieved with magnesium and a little extra salt.
A couple of other medications you can try are Lamotrigene and Flecainide. Also the amino acid L-Taurine can be effective for many people (2-3 grams per day).