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