Need your expertise: Chest pain related to PM

I was hoping you all could help me shed some light on some difficulties I am having.

I have had my pacemaker now for four years due to my heart stopping when I go from sitting to standing. In those four years I have never had a problem with my pacemaker until recently.  In the past month, I have been to the ER three times with extreme chest pain where anything life-threatening has been ruled out. I have had a stress test and echocardiogram that were defined as "stone cold normal" by my cardiologist. In the ER, my husband and I realized that every time my heart rate went under 70 (where my PM low is set), my pain would become intense and then my heart would race.  We are convinced that the pain is caused by the pacing itself as the pain is located directly under the pacemaker. My cardiologist dismissed our thoughts about broken leads or pacemaker malfunction.  The pacemaker tech, on the other hand, can tell something is causing the intense pain and is trying to figure it out.  Have any of you had this problem? Do you think it could be the leads, and if so, how would I  find out?  Could scar tissue interfere with the leads or pacemaker itself?

I would appreciate any thoughts you would consider sharing. I am at my wits end and cannot tolerate this pain much longer.  Thank you in advance for your time.

Donna

1 Comments

seek referral

by Gotrhythm - 2016-11-13 14:06:45

I'm sorry you're having trouble. I know how scary it is to know something is wrong with how your heart is reacting to being paced, but not even to know what questions to ask.

Doctors are taught to look for the obvious answers first. Trouble with a pacemaker is actually very rare (Pacemaker Club archives notwithstanding) which is why your doctor brushes it off.

I suggest you ask for referral to a PE at a major university hospital where rare and unusual conditions are more often seen, and there is a culture of curiosity and a rare case is seen as a chance to add to the overall knowledge rather than an annoyance.

My pacemaker was interferring with my natural raggedity rhythms causing extreme intermittant pain. Without being over-dramatic, I can say Duke saved my life.

Here's a piece of advice that may seem counter-intuitive. Just before your appointment, do everything you can to bring on your pain. Doctors can't diagnose what they can't see. 

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My pacemaker was installed in 1998 and I have not felt better. The mental part is the toughest.