Hello

Am new here. Have had myotonia all my life and am 52 years old now. Despite frequent falls and other minor disasters in childhood, it wasn't diagnosed till I was 14. That too, by chance. A doc who was fresh out of medical college saw me climb a few steps and asked what the problem was. He made the connection with what he had learnt and EMGs more or less settled the issue.
I took taurine, dilantin, phenytoin and procanamide, but they had no effect on the myotonia. What did have a spectacular effect was betamethasone, a corticosteroid which couldn't be taken for too long. I began taking Mexitil in 2000 and am still on it. It's the only drug (other than the betamethasone) that has worked for me and I haven't experienced any of the frequently mentioned side effects (or at least in a degree I would have noticed).
My problem now is that it has become increasingly difficult to get mexiletine after the German manufacturer stopped making Mexitil. Have been getting it through a drug importer from the US and the process is frustratingly complicated and expensive. Can someone please tell me how flecainide compares?

Type of Myotonia: Thomsen's

Country: India

Hello Anil!

Wow, reading your post was like a trip down memory lane! I am 51 and was diagnosed with MC when I was about 12 years old and spent a long time on procanamide, which had some beneficial impact.

I tried phenytoin but the side effects were too much for me; Mexitil was by far the best. Sadly we can't get that in Britain now either.

I moved to flecainide earlier this year and have enjoyed some benefits. The myotonic symptoms are definitely eased, but not removed. I still suffer cramps and experience muscle stiffness but my recovery time is much quicker than without any drug intervention.

The only side-effect that I seem to suffer is occasional bouts of vertigo, otherwise it is proving to be easy to use.

I hope that this helps.

Type of Myotonia: Becker's

Country: England

Hello Peter

Thanks. Think I'll do the same as you -- give flecainide a try and see if it works. What remains to be done is finding out if it's available here and if my doc will give me a prescription for it. But that shouldn't be very difficult.
I'm supposed to be getting 100 capsules (200 mg) of mexiletine from the US in a few days. If it comes through, will wait to begin the flecainide experiment till they're almost over.
Used to take two 200 mg capsules a day for around eight years. Then began working from home (editing academic work) and found I could manage fairly well on one capsule a day. Of course, there's a bit of stiffness but it can be overcome in a relatively short time. Would be happy if flecainide does as much.
What's the dose you now take?
A friend tells me mexiletine is available in China under the name of "Mexiletine - Changzhou Siyao". Don't know how true this is, but am thinking of finding out. Many businessmen here now have some connection or the other in China and I could ask one of them.

Type of Myotonia: Thomsen's

Country: India

I take 1 x 50mg capsule twice a day. As flecainide is a drug designed to treat heart arrythmia I have regular checks to make sure that I am not suffering any damage to my heart.

I find life easier using it, not perfect but certainly more manageable.

I had to wait awhile before starting the flecainide after the last of the Mexitil, my doctor wanted to make sure that it was out of my system so that there was no conflict between the two drugs.

One other point, I have no doubt that you have considered this but buying drugs from sources that you might not be able to check could prove dangerous, there are counterfeit medicines out there and taking something that looks like Mexitil but is not could prove very dangerous. Please be careful.

Type of Myotonia: Becker's

Country: England

Hello Peter

Thanks. Also for the friendly warning. Don't worry, much as my desire to get mexiletine may be, I'll take care to not end up being taken for a ride.
Worse comes to worse, I think I can manage without medication though that will have its inconveniences. Did so for many years between the early 1980s and 2000. I'm pretty sure you must have as well.

Type of Myotonia: Thomsen's

Country: India

Yes, I had a long spell inbetween finishing Mexitil and starting Flecainide when my MC symptoms came back with a vengeance. They are pretty bad anyway when I don't ahve any medical intervention but even though I had a controlled withdrawal of the Mexitil I felt awful for several days.

I hoep you get something sorted soon Anil.

Type of Myotonia: Becker's

Country: England