I am 53 and was diagnosed with MC when I was 10. At first I was on Quinine (malaria medicine) and Calcium tablets. This helped tremendously as I was a very active 10 year old boy with sports. Until this time I could hit a baseball to the fense but never able to leave the batters box without falling.
My Rx was then changed to procanamide. I was on that for 10 years until I moved to Florida in 1979. Once in the warmer climate I chose to drop my medicine all together. It's been a little challenging, however I'm still able to run marathons (running for 5 hours without stopping is easy...it's once we stop that we tighten up :)).
Recently I started taking a calcium carbonate supplement and it appears to be making my muscles relax more quickly. And calcium helps with bone strength also, so it can't be harmful.
I do wish to find out whether calcium does in fact curb the affects of MC or is it just my over optimistic view?

Type of Myotonia: Thomsen's

Country: USA

Randy,

I used to take 1000 mg of calcium lactate per day. Once I started drinking a lot of skim milk I cut back on the calcium supplement, but it definitely helps relax muscles.

Calcium carbonate is the poorest absorbed form unless you take it with some sort of citrus juice. You can get calcium citrate or lactate which are better absorbed, but they are more expensive.

Whenever you take extra calcium it's important to get adequate sodium and also some magnesium to keep everything in balance. Too much calcium without balancing electrolytes can actually worsen myotonia. You also need about 20 minutes of sunlight per day or a vitamin D supplement to help the calcium get stored in the bones rather than tissue. Since you live in Florida and run outside a lot I'm assuming you get plenty of sunlight.

I'm not sure why procainamide is not normally prescribed for MC. It is a sodium channel blocker like many other drugs used to treat myotonia. Did it work well for you? I suspect it has more side effects than the other commonly used medications. I know that it can cause a drug-induced form of lupus.

That's great that you are still running marathons. Thanks for sharing your experiences.

Jan

Type of Myotonia: Thomsen's

Country: USA

Thanks for the info on calcium, Jan.

Regarding the procainamide, I was told by the doctors at All Childrens Hospital (MDA Clinic) in St Pete, Fl. that after extended use of it my motor nerves (messenger between muscle and nerves, I believe)would "fry-out". I believe that is where the Lupus type condition presents itself. Upon hearing that I decided to go cold turkey on any meds and see how the Florida climate helped. If nothing else, Florida helps with a better disposition about my condition:)

Here is another interesting finding I just came across last night. My family doctor prescribed fluoxetine for me a few years,due to anxiety and stress from employment status, etc. I sensed a calming relief to my muscles immediately, although not completely. To this point, I found last night in PubMed that back in 2009 they found fluoxetine to have completely relieved MC during EMG testing.
This caused me to wonder whether fluoxetine has a similary affect as quinine? Since I was originally prescribed quinine and calcium after my diagnosis as a youth, I am wondering whether I am now experiencing the same relief from the fluoxetine and calcium combo?
I can not tell you have much more relaxed I feel since recently consuming calcium carbonate along with my daily fluoxetine (20mg) Rx.
By the way, my "marathoning" has been curbed greatly, as my knees are showing wear and tear signs. However, this doesn't prevent me from biking and running shorter distances...Florida certainly is the fountain of youthfulness:)

Thanks again for all your assistance and starting up this site. It's very helpful!

Type of Myotonia: Thomsen's

Country: USA

Randy,

SSRIs are a bit of a puzzle. I have gotten conflicting feedback about them...some say they really help reduce myotonia, and others say it makes them worse.

Serotonin does activate the chloride ion channels, and that's probably why some of us feel the stiffness let up a bit toward the end of the day as our levels begin to rise. But since many of the SSRIs contain fluorine molecules which blocks the activity of the chloride channel. In fact I am careful not to drink fluoridated water or use fluoride toothpaste because it makes me so stiff.

Since you are taking calcium along with the fluoxetine, that will give you some protection against the negative effects of the fluorine. In general SSRIs are not prescribed for myotonia, but as you said the article from Italy does raise the question about the potential as a therapy. My biggest concern is the effect it has on younger people related to increased suicidal tendencies. And it is extremely difficult to wean off of - it has to be done very slowly to avoid some serious withdrawal symptoms.

Unless it is prescribed for other reasons, I don't think it will be a common therapy for myotonia congenita, but perhaps there are other ways to increase serotonin that would be safer for the general population such as the supplements 5-HTP (precursor to serotonin) and B6.

I wish we could set up a MC resort in Florida for all of us to visit in the middle of the winter :-) You are lucky to live there all year! I would trade my Colorado mountains for the ocean, but there are definitely times around January and February when my muscles would appreciate some warm weather.

Jan

Type of Myotonia: Thomsen's

Country: USA

Maria, I believe what the person was referring to as far as a malaria drug would be Quinine Sulfate. It was one of the first treatments for myotonia and is still used by many people.

Many anti-convulsants like Vimpat have been used to treat MC. They block the sodium channel which helps reduce seizures, and for us it indirectly helps with the chloride channel function.

Jan

Type of Myotonia: Thomsen's

Country: USA