Long QT anyone?

Last September, I had a cardiac arrest due to ventricular fibrillation caused by "long QT syndrome". I know my condition is pretty rare, so was just wondering...how many of you who are reading this have the same diagnosis?

3 Comments

I do I do!

by sboissonnas - 2007-09-19 10:09:00

Hi Lydjahh,

I've got Long QT also, as do a number of other folks on here. I seem to have the mild form of it though (type 1) - do you have the one that gives you Torsades de Points? That must have been pretty scary indeed.

Did they send you through some kind of test to determine what form of LQTS you have? Mine was called an "epinephrine challenge" and involved them shooting me up with higher and higher doses of epinephrine to see if I'd go into cardiac arrest. I don't think I fully grasped the seriousness of it until they put those little shock pads on my chest to show where to put the paddles if I went into a heart attack...

Anyway, we're sorry to hear about your diagnosis, but you're definitely not alone on here!

Take care,
Stephanie

long QT

by luckyloo - 2007-09-20 12:09:36

i have long QT. it is a charactoristic of andersen-tawil syndrome....an ion channel disorder. i have a defib

luckyloo

Type 2

by mkidd3031 - 2011-04-20 11:04:14

I have type to. The one that causes Torsades De Pointes.I'm only 17 years old. I have both a pacemaker and a defib. ITS VERY HARD. Every little thing that happens i start freaking and thinking im gonna die. I've had bad headaches for about 3 months now. I ended up having to go to the hospital because i thought it was something to do with me heart. When they first found out i had it, the heart wasnt pumping blood to my brain and i would pass out. I passed out around 8 times and ended up in 3-4 hospitals before they realized what i had. It was an emergency Defib and pacemaker. It's hard, but im sure ill manage. Going on 1 year of having it April 23, 2011!!!

You know you're wired when...

Bad hair days can be blamed on your device shorting out.

Member Quotes

We are very lucky to have these devices.