Just got my AICD 3 weeks ago and not sure about something.  I was born with Tetralogy of Fallot and have a conduit with valve and have had 5 heart surgeries throughout my life so I've lived with PVC's and irregular beats my whole life. After I got my AICD, at least once a day I can feel what I think is the pacemaker coming on, which makes me anxious even though my heart rate is steady. I have sent transmissions and they told me everything is working fine, nothing going on, maybe I'm just feeling it working.  After about 10 to 30 seconds, sometimes longer, I sometimes feel 3 quick beats and then it "turns off" and I'm back to normal.  Just wondering if anyone else has had this experience and does it gradually go away after healing. 

I usually take a Xanax if it is at night just to get me to sleep and not worry. 

Thanks to everyone here and the support of this forum.  I'm so happy to have found a support group. 


Automated implantable cardioverter defibrillator (AICD)

by Gemita - 2023-08-05 03:32:25

Longon, I am so sorry to hear you are a Tetralogy of Fallot patient and that you have now received an AICD because of the risk of developing a serious ventricular arrhythmia.  An AICD provides therapies in the form of anti-tachycardia pacing or shocks to convert any dangerous arrhythmia like sustained Ventricular Tachycardia or Ventricular Fibrillation to sinus rhythm should this ever occur.

I see you have lived with irregular heart beats all your life, including PVCs.  They are awful, I well know.  I wonder if you are feeling your PVCs sometimes rather than your AICD which is making you anxious?   Of course it could be other things too, including AICD automatic daily checks on your device or perhaps you have been receiving short bursts of pacing therapies if it is not related to your PVCs.  

I would respectfully and firmly go back to your cardiac team and describe again exactly what you have told us, explaining that it would help you to know exactly why you feel these sudden rhythm changes and whether they might be due to a new arrhythmia, to your PVCs, to any pacing therapies or due to some automatic daily checks?  Understanding what is going on is so important to managing your symptoms and will help you to overcome any anxiety.  With time and after healing has taken place, I am sure you will feel your pacing less. 

If medication for anxiety is not helping, you could ask about other treatments for anxiety to help you to cope while you are getting used to your new device.  I hope ICD members will see your post and respond shortly with any personal advice.  I wish you the very best


by Philli1 - 2023-08-05 03:40:54

Hi Longon29

i have an ICD as well. I noticed that every day i could feel the device clicking in my chest. I would count them and there were 11 consequentive clicks every day occurring at different times of the day. I mentioned it to my tech and he turned a setting off and I haven't had them since. I think it was the device checking itself every day. Hope this is useful.

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