Hi, I am in my mid-40's now and have been diagnosed with CFS (Cramp Fasticulation Syndrome) which is a benign type of condition which causes constant muscle twitching in both of my calf muscles. I also have chronic tinnitus and a middle ear eustachian tube dysfunction in both ears which both have been severe over the past several years, a hearing test confirmed high-frequency hearing loss in the same frequency as the tinnitus. I have been experiencing severe muscle stiffness and soreness after exercise which has increased in severity over the past several years. Burning and stiffness when climbing a set of stairs (feeling paralyzed at the top for a few seconds) has been most noiceable or getting up after squatting down has been noticeably difficult. Legs feel heavy and sore a lot of the time. Sometimes I will be walking along and stumble over my own foot. I have experienced a major ramp up in tinnitus severity after any type of physical activity, even moderate walking and have always wondered why? I have mentioned this to multiple doctors (may specialists) with no real answers or concern as to the reason. I have this other weird condition called geographic tongue which seems to be affected by the stress of dealing with all of these things going on but rheumatology testing didn't come up with any linkages of the conditions. I recently read an article about a lady who went through years of wondering what was going on and finally was diagnosed with the cramp fasticulation syndrome, followed it further and found out the cause was paramyotonia congenita. After researching the condition, this has led me to thinking now there is a myotonia connection with the muscle fatigue and elevated potassium causing the elevated tinnitus. Ran it by a second neurologist and have a referral for further detailed testing of this. Has anyone heard of this affecting anyone with a myototonia condition and tinnitus?

Type of Myotonia: unsure yet

Country: USA

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

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

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

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