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Re: Tinnitus and Myotonia Congenita

Hi, keith
There is a "suspicion" amoung clinitians and researchers that sensory neuropathy accompanies some Sodium Channel Muscle Diseases. If there is sensory neuropathy then serum glucose levels will amplify the effects. Fasciculations will be more intense, and tinnitus may be louder.

People with Sodium Channel Muscle Disease actually feel better while maintaining a high serum glucose level. The inevitable follow-on from this is Insulin Resistance, Impaired Glucose Tolerance, and Type II Diabetes.

It was easy for me to eliminate sugar from my diet. If you can do that it should show a quick reward. It is much harder to limit potassium intake. A little Google for a "Dialysis Diet" will show what to aim for.

My condition was much as you describe but has greatly improved with the diet described and with 250mg Acetazolamide (Diamox) once per day.

Type of Myotonia: SCN4a

Country: US

Re: Tinnitus and Myotonia Congenita

Thanks Joe, I find that a high carb sports drink before exercise can get my legs back to feeling "snappy" instead of sluggish? Especially after exercising the day before. Sounds like it might b a double edged sword though?

Type of Myotonia: unsure yet

Country: USA

Re: Tinnitus and Myotonia Congenita

Interesting. I had no idea that tinnitus could be a symptom of MC. I have been suffering from it for many years. Was tested to still have good hearing, but this ringing drives me crazy!! Doctor said there was nothing I could do about it.

Type of Myotonia: beckers

Country: usa

Re: Tinnitus and Myotonia Congenita

I've had severe tinnitus for years, too. Mine started after a car accident that damaged some discs in my neck and I was told that can set off tinnitus because of the effect on the auditory nerve.

Myotonia can contribute to it because the muscles tend to get stiffer where nerves are pinched. I had a hearing test a few weeks ago and the audiologist said I had the best hearing of anyone he had seen in years. So fortunately in my case the tinnitus isn't related to hearing loss, but it can make you crazy sometimes. I keep fans going and sleep with an air filter going at night for the white noise.

Jan

Type of Myotonia: Thomsen's

Country: US