I've had myatonia congenita of thomsen all my life and so has my sister. I am 47 she is 45.. About 15 years ago i stumbled on an article about using quinine sulphate or quinine bisulphate to help the disease.. This is also used to treat malaria.. I went to my doctor and asked for a script to try it out.. Then once i had and it worked i went and saw my sister and i took her to some stairs and told her to watch me... I ran up the stairs and i blew her away.she couldnt believe her eyes it was the best day in years. We have both been taking quinine for 15 years and i'm now able to move around normally by taking 2tablets every morning.. I get a bit stiff on a cold day but its now manageable. And i dont worry about someone bumping into me and making me freeze up and fall.. God that used to suck.. I remember being teased at school when walking after sitting too long or climbing stairs.. Even my own father would tell me to stop being stupid and get up the stairs..my niece also shows signs of the disease and quinine helps her too.. I only hope my 5year old son never gets it.. I hope my experience can help someone out.. Feel free to contact me if you have any questions... Brubron65@hotmail.com

Type of Myotonia: Thomsen

Country: Australia

Bruno,

Thanks for sharing your family's experiences with quinine sulfate. It is the oldest treatment I know of for MC and is often quite effective. Unfortunately in the US the Food and Drug Administration decided that all quinine manufacturers had to go through an application process even though they had been selling it for decades. This was so cost-prohibitive that only one company went through with it and now the price of quinine in the US is ridiculously high.

There are two cautions I have regarding using quinine. One is that it is ototoxic which means toxic to the auditory nerve. Most people who take it for a long period of time have tinnutus which is kind of a whistling noise in their ear from damage to the nerve. It can actually progress to deafness, so it's important to get regular hearing tests.

The other caution is that quinine is contraindicated for anyone with a G6PD deficiency. This is very common in Middle Eastern and Mediterranean populations, so that must be ruled out or it will cause a severe hemolytic anemia that can result in death.

Quinine water is also effective, although not as much as the tablets. Again in the US this has been strictly regulated now so that the amount of quinine in the tonic water is negligible. But for some people it still seems to have a bit of an effect.

The more commonly prescribed medications now for MC are mexiletine, flecainide, acetazolamide and phenytoin. These all have their own contraindications and side effects. Actually quinine is probably one of the safer drugs and it is readily available in areas where mexiletine is not distributed.

I have had good results using licorice root. It has no side effects if you take a reasonable dose. In doses higher than 5 grams per day it can raise blood pressure. I only use 500 mg per day and it definitely helps. If your son does show up with symptoms as he gets older perhaps you could try that since it is so safe. I don't recommend medications including quinine for children.

Glad you're free from the stiffness...it is amazing to be able to bound up a flight of stairs!

Jan

Type of Myotonia: Thomsen's

Country: USA

Screw the FDA. If you know the risks, this company is great and totally legit. I've gotten other things from them: https://www.alldaychemist.com/supplier.php?id_supplier=367

Type of Myotonia: Thomsen's

Country: USA