Sudden Cardiac Death Survivor update

[Pamz]

March 1st will be a year since my son's heart decided to go haywire causing him to suffer from cardiac sudden death and now things seem to be starting up again.  Just before Christmas he rec'd a shock from his defibrillator and now, yesterday, he was shocked twice.  He was jogging again - just hit the 3 mile mark and crossing a major highway when it went off the first time.  For his 24th bday in January, we got him a wrist heart monitor so he can tell when he needs to slow down.  He said that he never hit the limit of the icd (it's set for 188 and he went off at 175).  He got across the highway and sat down, got his heart rate down to 137 and it went off again.  Instead of calling anyone, he waited until it was down to 85 and then walked the last mile back home, took a shower and then went to the hospital.  His dr is out of the country and won't be back until tomorrow and then won't be able to see him until Tuesday.  Basically, they did an echo, downloaded his icd, told him not to exert himself in any way and gave him a script to keep his heart rate low.  They also tested his wrist monitor to be sure it is working correctly, which it is.  This is so wierd because he's always had such a low heart rate and today, doing nothing at all, it was 90 bpm.  When he stood up, it went up to 100.  He says he feels fine, which makes me feel a little better but I really don't want to wait until Tuesday.  I hope that they decide to do another EP study and maybe they'll find something this time.

[Pamz]

Today, they put my son on metoporol, changed his pacemake to 50 and his defibrillator to 201, which is the maximum that they will put him on.  They said he is suffering from atrial fibrillation and that he actually probably was suffering from this prior to him suffering from cardiac sudden death.  They think something like this is happening, the bottom half of the heart is not recieving the signal from the top half saying that's it's beating fast and then the bottom half starts beating too fast, trying to make up for the top half and becomes irregular and then he gets shocked.  The metoporal should slow down his heart rate or slow down the atrial fibrillation and if it gets too slow, the pacemaker will kick in.  He's pretty unhappy about all of this, one, he hates taking any kind of medicine and two, he can't understand why this would just start, 1st the SCD and now this.  They want him to let his body adjust to the meds and then he can begin working out again.  The dr said it just starts, no reason why when it's something hereditary.  We are going to look into doing a genetic study but that will only help our daughter and any kids they have, not him.

[kizzie100]

i think your sons ICD settings need adjusting - the ICD company have technicans that can usually set up the devices better than the techs at local hospitals.  My 19 year old son has just had one fitted and it has taken quite a few alterations to get things running smoothly.  he is also very fit so the settings have to be pretty accurate. Trail and error seems to be the thing not that is any consolation cause unneccessary defibs are not at all acceptable.  

[Pamz]

No, haven't heard anything about sinus tachycardia but, his heart rate just recently started beating faster - it's normally very slow, bradycardia.  But, we've always been told that that was normal for him because he was so athletic.  

[crystalhanzelka]

I have sinus tachycardia at times...as we all do.  If your HR goes over 100 for any reason..even exercise...you are tachy.  Tachycardia most likely would not set the defib off.  It has to be some crazy arrythmia like V Tach or V Fib or something.  I can not believe they can not figure out what is going on.  It has to be so scary for you all.  Keep us updated.

[goochgirl]

Did they ever say anything about it being sinus tachycardia? This is where the sinus node that tells your heart to spead up is. It is also an electrical signal coming from your brain and it goes haywire at times for no reason.  Usually a simple beta blocker med works

[Pamz]

No, his heart is absolutely normal, no enlargements or anything except has some sort of an electrical problem but they haven't been able to find out what it is so instead, after his episode last year, they implanted the icd and he's been pretty good up until lately.  He's had an ep study done already last year before they put in the icd.

[andrew0099]

Has your son been diagnosed with HCM or an enlarged heart?