Mexiletine for Myotonia Congenita User Reviews
Mexiletine has an average rating of 7.0 out of 10 from a total of 3 reviews for the off-label treatment of Myotonia Congenita. 33% of reviewers reported a positive experience, while 0% reported a negative experience.
- S Bear
- Taken for 1 to 6 months
- July 4, 2017
"I have been using this for a couple of months and have been able to start a wave of exercise that I have never been able to before. I can run without my body seizing up and punishing me. As this is relatively new as an option for me, I will continue to use it although I have found that my ankles are regularly puffy and i get more visual migraines. Still do not know if this is actually connected to the use of Mexiletine though."
- Bn03
- Taken for 2 to 5 years
- April 18, 2018
"This medication has been a lifesaver. I have Myotonic Muscular Dystrophy, type 1. In laymen's terms, this disease causes ,among other things, involuntary muscle contractions (aka myotonia) usually in appendages (arms, legs etc.). I was experiencing excruciating, throbbing pain in my legs which interfered with balance and weakness. This medication has virtually eliminated this pain, in turn improving the balance and weakness. I had some heartburn but no other side effects. It worked quickly and I never miss or skip a dose."
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"I was prescribed this medication for an autosomal dominant form of myotonia congenita that my neurologist said wasn't a more common variant; he'd only ever seen one other patient with my variant type until seeing me. Mexilitine is the go-to course of treatment for MC, so we decided to go this route first. For the first two weeks, if I'm remembering my timeline correctly, I was in heaven from the honest-to-goodness relief that I felt. However, it was short lived to say the least. After the initial two weeks of thinking "Is this how things are supposed to be? Do people really feel like this? This is really normal?? This is fantastic!", the medication abruptly stopped working for me. We kept titrating my dosage up until we got maximum benefit levels, but it never worked again like it did those first two weeks. It was heartbreaking. And the only side effect I'd ever really noticed was no longer being able to drink coffee, since it increases the effects of caffeine (palpitations)."