Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: medicine

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

Re: medicine

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

Re: medicine

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