Has anyone else taken acetazolamide. I started taking it 2 weeks ago and it seems to be working. Muscles are not so tight and climbing stairs are getting better.. Side effects are tingling in toes and fingers and going to washroom more often. The dosage is 125 mg for 2 weeks then 250 mg after that. Going back to toronto general in 2 months to talk to specialist. I will keep in touch as weeks go by.

Type of Myotonia: thomsens

Country: canada

My daughter was prescribed acetazolamide... But it did not work for her... she was on it for about a month..... she is 7 years old... then we just stopped it.. and now we are just waiting for the miracle drug to come out for thomsen's....
I have not tried it yet... but i think i will in the near future... just to see if it will work for me.....

Type of Myotonia: thomsen's

Country: lebanon

I'm just finishing my last box of Mexilitine so I could be trying Acetazolamide soon if my neurologist thinks that I might benefit from it.

Type of Myotonia: Becker's

Country: England

I have used acetazolamide and been very happy with it, actually the best I have ever received for Thomsen - until I got kidney stones from the product.

Kjeld

Type of Myotonia: Thomsen

Country: Denmark

That is definitely a common side effect of acetazolamide therapy. There are a couple of things you can do to minimize stone formation.

First of all, you need to stay hydrated...lots of water. Juices with citrate are very effective at preventing stones:

Preventing Kidney Stones
Some doctors prescribe potassium citrate, but of course that would not be good for us because of the high concentration of potassium. You can get powdered sodium citrate from many candy and homemade soda supply companies.

You can also use a low oxalate diet:
University of Pittsburgh Medical Center Low Oxalate Diet


And the last recommendation is to eat a lot of whole grains. The bran will block excess absorption of calcium. I think it's best to get the bran intact with the brown rice, wheat or barley, but bran cereals are also beneficial.

Jan

Type of Myotonia: Thomsen's

Country: USA