I hope they didn't tell you you couldn't have kids because of the myotonia. Some males with myotonic muscular dystrophy are sterile but, but would be one horribly misinformed doctor if he thought you had MC!
Mexitil worked really well for me but I can't get hold of it now. I've switched to Flecainide, something similar to Mexitil, and it is proving almost as good so far.
My neurologist is cautious about the dosage, I've just gone up to 2 x 50mg, but it definitely helps.
I hope you get your situation sorted asap; we don't need to suffer anymore than necessary!
Jenna, Dr. Lehmann-Horn had corresponded with me about lamotrigene (Lamictal) as a substitute for Mexitil when it became unavailable in Europe. Some patients aren't tolerating flecainide (Flecaine) well so he was interested in this as another option.
I mentioned it a few times on the forum and in private emails and have gotten some feedback that it is helpful. I think it is probably very similar to Dilantin, but is a newer class. But it also acts as an antidepressant which several people have mentioned they have in addition to myotonia. So perhaps it will be a good treatment for people who have both.
Sam, you do need to watch for a rash and if one develops, stop taking it immediately. There is a small risk of developing Stevens-Johnson syndrome (true of many anti-convulsants). It is less likely if you work up to the target dose slowly.
Thanks Jan and Jenna for your quick replies. I am seeing my GP again tomorrow and will discuss. I haven't got to the gentic test yet as there is a long wait and there are some options I need to sit and think about first. The public system here turns you into a guinea pig, I have done that when I was younger although it was humilating at least there were lots of access to info at that time. The private system way is super expensive and I have just been given one choice of drug in all of that. Once I see how lamictal goes for another week or so. I may just have to suck it up and go through the system..yuk, I mean I have had three babies and really what dignity is left after that .....so with that in mind I will tough it out. Thanks again to anyone who replies I feel so much better with this forum. all the best to you all!!
Type of Myotonia: Thomsens - we think awaiting test