New PM Patient - Idiopathic Paroxysmal AV Block

Hi everyone! I am new to this group. For 15 yrs I have lived with near-syncopal episodes. It was only less than 2 weeks ago, that I had a loop recorder implant. The very next day, the recorder caught a 6 sec pause in my heart. This changed my entire life. I was quickly diagnosed with Idiopathic Paroxysmal AV heart block (rare and still under research). I have a structurally normal heart and normal ejection fraction (>65%). An EP study was done (normal conduction system). My cardiologist and EP doctors have no explanation for my random heart pauses but have reassured me that there is a lot of research being done. A single lead Pacemaker was implanted and only fires when these pauses are detected. All these happened in a span of 1 1/2 weeks! I am now recovering post implant. No driving for 2 weeks, L arm restrictions and weight lifting for 8 weeks. I joined this group to learn about others' experiences with a pacemaker since I personally don't know anyone with one!

4 Comments

welcome!

by Tracey_E - 2016-02-20 04:02:06

Glad you found us! Most of us have no idea what happened. Sometimes surgery, infection or medications can cause electrical problems but more often in younger patients, they're just a random fluke, a short circuit in an otherwise perfectly normal, healthy heart. The good news is it's also an easy fix. Your heart pauses, the pacer kicks in and tells it to get with the program.

Most of us heal and get on with our lives. There are very few things we can't do with the pacer so it's easy to forget it's there. I have av block also, have been paced since 1994, got #5 two weeks ago. You'll be back to full activity before you know it!

settings

by Tracey_E - 2016-02-21 02:02:09

It's not at all uncommon to take some time to get the settings just right. They start with a good guess then modify as needed.

I've never heard of idiopathic paroxysmal av block, however idiopathic means random and paroxysmal means sudden so I assume it means sometimes you suddenly, randomly go into av block. I have 3rd degree block which means I stay that way all the time. AV block is when the atria beats but the ventricles do not because the signal is blocked between the SA node in the atria and AV node in the ventricle. The pacer works by watching for the atria to beat. It'll give the ventricles a fraction of a second to follow, if they don't it will kick in with pacing. It doesn't much matter what the lower limit is because your own sinus node is setting the rate, not the pacer.

If you do have sinus pauses. it still shouldn't much matter what the lower limit is because it's only kicking in for a few beats at a time. If it's set to 60 bpm (using that for example because the math is easy!), that means it won't let your atria go more than a second without a beat before it kicks in. It won't wait a full minute, it's watching every beat. The important thing is it doesn't let your heart pause for more than a second, or just over a second if you are at 45. They will try to make it so we pace as little as possible because it's always best to let the heart beat on its own if possible. If 45 isn't working, it's easy enough for them to turn it up to 50 or 60, which is much more common. 45 is pretty low.

Thank you!

by Pinecone - 2016-02-21 02:02:29

Thank you TraceyE for your comment. As soon as I recover, I hope to go back to work (I ironically work in heart surgery!) and continue getting regular exercise. My pacer may need some adjustments. I still get some random "pauses" since implant and will let EP doctor/EP nurses know at my upcoming follow-up. My baseline rate may be too slow at 45 bpm and my pauses longer. Oh gosh! Lots to learn!!! I'm just hoping to heal and not to pull out my lead!!! Thanks again! Will continue to follow this group for wise suggestions and experiences.

Rest assured

by Good Dog - 2016-02-21 11:02:06

You can rest assured that given your situation, this big change in your life is a positive one. You will find in time that you'll forget you have a PM and you can live a long and normal life ("normal" is the important word here) without symptoms or worry.
A little tweeking is necessary when you first receive a PM. Once it is adjusted properly and you have a month or so under your belt, it is clear sailing ahead. The only thing you need to do is go out and enjoy life!

Sincerely,

David

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