Pacemaker Syndrome

Hello,
I have been recently diagnosed with pacemaker syndrome after five years of unbearable symptoms and searching for a doctor willing to help me. It all started when I had a sharp pain while exercising in the left side of my heart that put me in the bed for the rest of the day. My last electrophysiologist put me on Inderol 20mg per day... which helped a little with the symptoms; however, my blood pressure was staying so low, I didn't feel alive. I discontinued this medication about a month ago and have gone even further downhill. I am scheduled for a CT scan tomorrow to determine if there are any issues with my ventrical lead since I am having the sharp pains. I am just curious if anyone else has this syndrome and if they have been successfully treated. My doctors just keep telling me I am just going to have to live with it. I simply don't believe there is nothing that can be done with the technologies we have today. Thanks for any input!

2 Comments

Should be an easy fix

by golden_snitch - 2014-04-23 11:04:07

A pacemaker syndrome is caused by a bad timing of the atrial and ventricular stimulation/contractions. Sometimes , for instance, the ventricle starts to contract too early when the atria have not finished contracting, yet. Or the time between atria pumping and ventricles pumping is too long. Usually, this problem is easy to fix. If you have a dual-chamber pacemaker, you simply optimize the atrio-ventricular delay (in some cases an optimization guided by ultrasound images will be needed). If you have a single-chamber pacemaker, adding a second lead will most likely help. I don't understand why your doctors say that you have to live with it. Google pacemaker syndrome and you will find lots of articles describing what it is and what can be done to treat it.

I had a so called "pseudo pacemaker syndrome" which was caused by an accelerated ventricular escape rhythm. It was faster than the rate at which the pacemaker was pacing my atria. So, either my ventricles were beating before the atria, or atria and ventricles were beating at the same time. Drugs helped to slow this fast escape rhythm down for a few years, but when they finally failed, I had to have an AV-node ablation that knocked the escape rhythm out.

Good luck!
Inga

Know what you mean

by Gotrhythm - 2014-04-23 12:04:01

I too dealt with pacemaker syndrome--but only for 2 and 1/2 years. Only! I understand about the hardly-alive feeling and the severe pains that left me wiped out.

I wasn't told to 'live with it,' I was told there was nothing wrong, because, after all, repeated interrogations showed the pacemaker to be working "perfectly."

When I realized my cardio just plain didn't know what was causing my symptoms, I asked for a referral. That's when pacemaker syndrome was diagnosed and the doctor decided to simply turn off the ventricle lead.

I still have some issues with PVCs, but the severe pains that could bring me to the point of collapse are gone, and life is much better.

I'm sorry you've had 5 years of this.

Do not accept 'live with it.' Seek another opinion.

You know you're wired when...

Your signature looks like an EKG.

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This is my second Christmas with my pacemaker and I am so happy to be with my family.