Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Im eighteen years old and am awaiting the results of my Genetic Testing for CPVT. A lot of people have died in my family due to this rare diesease. I was wondering if anyone was able to shed some light on this diesease for someone is doesn't know very much. I feel like I am all alone.
Hi CarleeD
I am 38 years old and I was diagnosed with CPVT in May 2007. CPVT is a condition that causes the heart to beat abnormally usually quickly at times of exercise or high emotion. I have an implantable defibrillater (ICD) and am on beta blockers for treatment.
My brother was also diagnosed with CPVT 11 years ago. He also has an ICD and is treated with beta blockers and antiarrythmia drugs.
Most recently my mother was diagnosed with CPVT in the summer of this year. She is being treated with beta blockers.
All of us still lead normal lives. We just don't participate in any sports that require a high level of physical activity i.e. running, swimming etc.
It is not always easy to live with. Some days I feel okay and don't even think about it at all. Other days when I am having more palpitations than normal I am more aware of it and try to take a bit easy. I find if I am stressed or not feeling will (cold etc.) I also have more palpitations. So try to take care of yourself, eat right and get lots of sleep.
Good Luck I hope all goes well for you.
Thanks for sharing some helpful things with me. I got my results back and I am CPVT negative but oddly I still have really bad palpatations. Do you know any other dieseses that would make your heart do that. I am currently on beta blockers.
Panic attacks can cause palpatations. Strong ones. beta blockers or other medicines along with behavior therapy can help you overcome them. Some times it makes you feel as if you were having a heart attack.
Thats what it feels like sometimes, but other times I can't breathe at all and my heart starts skipping beats. Its scary and un-usual.
Add to the discussion