Hi Nick -
I also have Becker's type MC. I am 59 years old, and was not diagnosed until I was 54, even though I have been complaining of symptoms since I was about 3. No-one ever believed me, and so I had to learn to deal with it on my own, and find ways to cope, and to overcome all the embarrassment. I have never taken any sort of medication for it, and when it was diagnosed, and Mextil was offered, I turned it down.

I have had heart palpitations (fluttery, rapid sensations in your chest, sometimes with shortness of breath, rarely associated with actual pain) most of my life, and I also have a small heart murmur. I just wouldn't take cardiac or other potent medications (like the anti-seizure medications which are also sometimes used) unless there was no other option. It just makes me personally too uncomfortable.

I always found that stretching and general exercise helped keep me comfortable, and warming up just before activity (when possible) kept me safe. It's the things you can't control - fear reactions, nervousness, and such, that, for me are the real problems. I get so incredibly stiff, and sometimes it lasts for hours - and when that happens, I also am very weak and achy.

However, I have lived with this for SO long that I incorporated it into how I live, so I am a nurse, married, with a son, dogs, and until fairly recently (due to an injury) I was very active. Maybe, since I was made to feel lazy and clumsy, I learned to over-compensate, but I do think that overall, my life has been relatively normal through simple stubbornness and perseverance.

And what better place to talk about your "personal thoughts" about myotonia, than on a forum dedicated to it, and populated by folks who have the same concerns and needs you do!!?? Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Thx Lois, i'm kind of new to this, i haven't realy been able to talk about this with people who actually understand it...

"have had heart palpitations (fluttery, rapid sensations in your chest, sometimes with shortness of breath, rarely associated with actual pain)"

This sensation you describe, does it take nomore then like a second or 2? Because if it does, i experience the same thing! First times it freaked me out!

Type of Myotonia: Becker

Country: Belgium

Yes Nick, for the most part my palpitations have always been fleeting little episodes of flutters, like a hummingbird or butterfly got stuck down in my throat or upper chest, and only lasting seconds. Sometimes it will catch me and make me feel short of breath - I always just stop whatever I am doing (If possible), and do very slow and calm deep breathing (in through the nose, counting slowly to at least 6 or 8), then gently but firmly blowing out through the mouth, also counting the same number.

It helps to stabilize your heart rate, pulse and blood pressure, and to soothe your anxiety level, so the palpitations can stop. Last January, my mother-in-law died very unexpectedly, and only 3 days after one of our dogs died just as unexpectedly. We also had some business stress in our lives, and I guess I didn't realize how I was holding it all in - and I had an episode of palpitations which lasted for almost 2 weeks!!! I tried staying calm and ignoring it for about 4 or 5 days, but finally my husband said I must go to the Emergency Room.

They monitored me for about 3 hours, said it was stress and not cardiac, and sent me home. But it didn't stop until my primary care doctor taught me some specific breathing and imaging exercises, and gave me a homeopathic remedy to take for it. That helped so much. I did see a cardiologist just for a full evaluation, but I was cleared, and it was suggested that even though the heart is not skeletal muscle, they are finding that it has certain properties which make it unlike other smooth muscle - so it may turn out to be possible that our MC plays some sort of role in these episodes. We just may not know about it in our lifetimes!

I guess I've blabbered enough - just wanted to let you know I get them too, and it did used to freak me out a bit, but I learned to just breathe through it, kind of a meditative internal calming, and to not be afraid. Have your heart checked out by a cardiologist (my neurologist insisted on a cardiac eval because of the MC!), and once cleared, just know it's one of your/our little quirks, but harmless.

night! lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA