My body pumps exsessive adrenaline under situations...such as going places and most anything that i worry about..and i also freeze and am paralysed i know what you are talking about because this is my biggest problem...for my safety and others cold weather also

Type of Myotonia: THOMPSENS

Country: U.S.A.

Hi, I have been struggling with the stiffness of my legs and I have been locking up & falling down as stiff as a board, It does make you scared of going out to cross roads or walk in open spaces, I dont have Dr's here that know anything about it, a walking cane really isnt enough for me either, a shopping trolley is the best.
Has anyone taken anything that helps?

Type of Myotonia: Thomsens

Country: Australia

Jenny,

The most effective medication is mexiletine (trade name Mexitil) but it is not available in Australia. You can get it from CanadaDrugs.com with a prescription but you would have to pay for it yourself.

The other medications you could ask your doctor about trying are flecainide (Flecaine), lamotrigene (Lamictal) and acetazolamide (Diamox).

If you want to try alternative treatment I recommend the amino acid Taurine (1-2 grams per day) or Licorice Root Extract (1-2 capsules a day). It also helps you reduce sugar intake and avoid high potassium foods. You can check my diet page on the website.

What you mentioned is very common and unfortunately the more anxiety you have in a situation, the worse the myotonia gets because of the increased adrenaline. You might want to try a rolling walker - you can get a type with four wheels, a seat and a basket. They're very lightweight and they are much more secure than a cane. I used one for a while when I had heart failure and it was great. Most people have a hard time giving in to using an aid like that, but it can improve your quality of life so much it's well worth it.

Jan

Type of Myotonia: Thomsen's

Country: USA

Hi Jenny
A shopping cart has been the biggest help to me for many years when I'm out and buy goods. The more and heavy things that come into the wagon, I have the easier time getting around. During the periods where I do not have large stiffness problems, so everything is very easy for me.

Jan
you mention just right a walker, I'll have one at a time. Have been meeting with two occupational therapists. They were both quickly realized that in my case it was probably not the solution. If I have to have a walker, it must be extra high. I am 197 cm tall. There must be fitted with extra weights on the walker up to 10 kg. Otherwise I fall over with the walker. But then it makes quite a few problems if you are going up along sidewalks and elevations. In a short time I have a new car, it is arranged so that there is room and easy access environment for a walker.
But for the vast majority would a walker be a very good thing. Try it out

You write it right that it's fear and MC together that blocks us who suffer from it. The big problem is how to get out of this vicious circle. From what I have learned that there is not any medicine that can help. Got a couple of years ago Lyrica, which might be the solution to the problem. Had no effect.
Kjeld

Type of Myotonia: Thomsen

Country: Denmark