Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: Mexiletine Use - Have No Fear

Hi Giselle,

I just found this website today! very exciting to hear others stories about a condition no one else seems to understand! but i am from sydney, and i also take mexilitine. i know you posted a while ago about this subject, but i just wanted to let you know that mexitiline has been a god send! makes me almost normal! do you have a regular neurologist that you go to?

it is quite difficult to access the drug, but i found that if you go to a hospital pharmacy they can get it for you. the only downside is the cost of mexilitine.

Thanks,
Olivia

Type of Myotonia: Congenita - Thomsen

Country: Australia

Mexiletine and Lacosamide

I was on Mexiletine for probably 10 years with no side effects at all. I was under the constant monitoring of a cardiologist. It absolutely relieves the stiffness completely. The only times you will get stiff again are if you exert yourself a great deal or if its cold outside. It sort of overcomes the drug's effect for a short time. The only problem for me is that I kept having to take higher and higher doses and it became ineffective over time. I am now on Lacosamide (Vimpat) in place of the Mexiletine. Its going to be in a clinical trial at the Kansas University Medical Center if they can get it approved. Its the only drug short of Mexiletine that shows true promise. It is not as effective but I feel it is helping. It is WAY less tolerant of a missed dose, so DON'T miss a dose! With Lacosamide, you get stiff immediately if you miss a dose. I take 200 mg twice a day right now, but it will have to go up because I don't have the relief I want. Don't be too frightend of Mexiletine. Of course, if you have side effects, stop the medication immediately. I don't think you will if you ramp up slowly as the moderator mentioned. Best Regards, Stuart

Type of Myotonia: Thomsens

Country: USA