HI ALL,

DOES ANYONE OUT THERE HAVE A ST. JUDE PACER WHO HAS BEEN DIAGNOSED WITH LONG QT SYNDROME ?

I HAVE HAD THIS PACER FOR 6 YRS AND I FEEL WHEN THE PACER GOES OFF. DOES ANYONE ELSE FEEL WHEN THE PACER KICKS IN ?

I EITHER LET OUT A LITTLE GASP, RECENTLY IF I AM HOME I YELL, OR I BABBLE LIKE THE THREE STOOGES !

I DO NOT KNOW ANYONE HERE THAT FEELS THEIR PACER GO OFF. JUST WONDERING...............
THANKS

 

 

I got my pm six years ago. When it started I would feel it kick in just under my ribs on the left hand side. I mentioned this to the tech When my pm kicked in I woould have to get up and walk around if I was sitting down when it happened. The tech altered the setting and no problem for the past four years plus.

Hope this helps

Sincere regards from downunder.

 

I have had a pm (Medtronic) for a sodium channelopathy (not LQT, but the same sort of thing. ) for 3 years. I am 40. Everytime it kicks in I get a tickle inside and it makes me cough uncontrollably for the duration of the pacing session. Fortunately these are usually short and i only pace about 8% of the time. The coughing arises because the ventricular lead also stimulates my phrenic nerve . ( i think!). Apparantly some small people (like me) get another nerve stimulated and get hiccups. So, my heart slows down when i hear deep long low frequency noises - lorries passing, organ playing, road noises or if i get a shock like the phone, when I am asleep - cough everytime!
At least i know it works!!

 

i have long qt (3) and just had a st. jude defib/pacer implanted on the 12 of may. i have bradycardia so the docs set my pacer to keep me above 70 bpm where my normal waking rate was about 45 bpm. i have been having a little bit of a hard time sleeping with that high of a heart rate, but haven't had any problems yet. i know that when they alter my hr w/ the machine and wand dealy-bob i didn't really notice it too much. don't feel the pm kick in at all.