ICD's

Just wondering if anyone out there has an ICD? I have had mine for two  years and received my first shock a few weeks ago. I was in the shower and fainted...smashing my face against the tub. I busted a tooth and will need a root canal and got a nice goose egg on the head.  I am now struggling with anxieties about being shocked or fainting again. My doctor's now have me on a anti-arrhythmia drug called amiodarone.  If anyone out there has an ICD and would like to share their experience and how they cope...I would love to hear your story. Sometimes it's nice to know you are not alone.

[MarkOKC4863]

I have only had my ICD for two months, but I have already been shocked once 30 days after I got it.  I guess i'm kind of lucky if you can really call it lucky because after having my original experience and my first shock, I seem to have a short period of warning first.  Not to say that will always be the case, but so far, I seem to be of the minority in that I feel symptoms when I'm getting ready to pass out or get shocked.  So yea, I've only had it two months, but the Dr's confirmed that it did actually save my life when it shocked me, so it was what they called a true shock.

[BionicBabe]

check out http://www.icdsupportgroup.org/. This is a forum for ICD recipients. It is extremely helpful and you will find that what you are experiencing is very common. I have had an ICD for almost four months and I have not been shocked yet. At least you know your ICD is working. Good luck!

[Jarmal]

I have had an ICD for a year now and never been shocked and i am only 32 years old. i  am really happy to meet fellow people with the same equipment withinin them.
Thanks cripppledcow girl for the link i shall check it out.
PS Why the name Crippledcow girl. And does the shock feel?

[mamaof1234]

i am 37 years old just had my first shock a week ago.i have had my implant three months.i felt my arrythymia and got dizzy and blacked out so i idnt feel the shock.i was really shook up afterwards though.i seen my icd nurse and she said it saved my life. i am glad for that but i am having alot of anxiety problems from it.hope the meds help its scary not knowing when it might happen or where you might pass out at

[George712]

I had a friend with an ICD and he got shocks while walking or doing very mild physical activity.  It stopped once his ICD was reprogramed  to shock the heart at a more appropriate higher heart rate.  Ask your cardiologist / electrophysiologist / etc.....

[kim62]

I have had my ICD for 7 months. I have been paced out of VT more than 15 times and shocked 3 times. I  have a warning time before it goes off. My cardiologist had my ATP(anti-tachycardia pacing) attemps set pretty high(8 attempts with 16 beats inbetween. He did this because I drive on the expressway to work and he thought it would be safer. I can say(knock on wood) that I have never passed out from VT before I got the ICD and never passed out from the shock either.
It also effected me after it went off. The level of anxiety it creates just waiting for it to happen again. My second and third shock were only 8 days apart!

[kim62]

I can across a  website   www.vtpatients.org  
If you go to the site, click on the link on the left that says Lauras Story. I feel it is an incredible story.

[48ballerina]

Hi there from UK.  I was diagnosed suddenly with CHF brought about by dilated cardiomyopathy and after various episodes of syncope and being hospitalised on several occasions, was implanted with a St Jude biventricular pace maker (3 leads). At first I was ambivalent but did my very best to come to terms with having this device inside me.  I am aware of it all the time since I am 52kg and 1.70 in height, so no fatty tissue to implant it into and it was put into the pectoral muscle sub clavically.  I am aware of it constantly - while I am moving around, while it cardioverts me and I have been shocked by it and it causes me great anxiety.  Now my quality of life is affected so much that I am terrified to do anything for fear of being shocked and have asked my cardiologist to deactivate my ICD altogether or have it removed. He is reluctant to do so on ethical grounds but it is perfectly legal and is not tantamount to suicide since I already have a well established and aggressive form of DCM. My ICD no longer serves its purpose - that is protecting me from sudden cardiac death.  I am now in constant fear, unable to have a normal life and do not fear death anymore since slipping into VF then VT is a merciful, peaceful and painless death.  Now all I have to do is convince the medical psychologist that I am neither insane nor am I suicidal, in order for my cardiologist to deactivate the device and preferably remove it.  I wish I never had this device implanted however, I know it is of great comfort to many people and is a life-saving device.  Good luck to all...........xx

[deltabravo720]

Hi there from London UK i had my icd fitted in Oct 2008 and gave me my first shock after 6 weeks as i was just about to play soccer
since then i've had no problems can sometimes be uncormfatable as my  left shoulder feels very strianed and tired
I have taken amiodaronein the past not now
the side effect i got from taking the medication was getting sudden flushes and felt scary esp when i was driving so vi decided not to take the medication and ive been fine
if you need  to take the tablets please stick to one manufacturer
if i took just one brand it was fine but when the pharmacy gave me another manufacturer i felt very uncorftable  
i hope this is of some help if you want to keep in touch
my email ***@****