Rate Response

Hello everyone!

I wanted to get thoughts on the rate response setting on our PM. I have a Biotronik Edora 8 DR-T dual chamber PM. With that said I've learned that it has different rate response features. Initially I had the CLS setting and it capped at 140BPM but it kept going off and made me feel awful. They lowered it to 120BPM and it made a difference but I'm not sure if it helped me or not. Anyhow they've turned that feature off and activated another which responds to my bodies motion.

My question is am I supposed to notice any improvements? I feel like all it does is make my heart speed up but I don't feel like it's helping my body any. I can actually feel the pacing, it almost makes me short of breath, my heart flip flops around in my chest at times and sometime I feel like I want to burp. I know it may sound weird but I don't feel like it helps me in anyway. When I had it first put in I was pacing only like 4%. Last week they said I'm up to 55% which is quite a jump. Anyhow does anyone know much about this or how it's supposed to help? I honestly feel like it does nothing for me. 

Am I supposed to feel the pacing, feel almost short of breath, flip flopping in my chest and almost a burping feeling? Ugh! When will I get back to some kind of NORMAL?!!! Lol!


Some answers

by crustyg - 2020-07-10 06:08:15

Hi: Sorry to hear that you're not having a good experience so far.

Different folk here have different requirements: those whose SA node has failed need rate response to drive their HR up, which is one of the mechanisms to increase cardiac output.  But not everyone needs this.  *Most* folk with heart block can rely on their SA node to provide an automatic increase in HR and the PM replicates that electrical activation to the ventricle/His-bundle to bypass the AV-node block, so don't need RR.

Many of us can feel our heartbeat - so we're not feeling the *pacing* but we are feeling the *effect* of the pacing.

You're worrying too much about things like percentage pacing - it really doesn't matter if you're 5% paced or 55% paced: what matters is that your heart does what you need when you need it.

When are you supposed to feel better? A: when your PM + heart gets your heart working as closely to what would be normal for you and you start living your life again.  This may mean that your PM needs adjusting for you - different pacing mode, different settings - and different mental outlook.  Someone very wise here said that the emotional scars of a PM take longer to heal than the physical ones, and that's very true.

Focus on doing what you used to do, or what you want to do, or what your cadiac rehab class/coach says you should do.  Then, if your PM+heart doesn't allow you to do this, make notes and talk to your EP team, give them the information that will let them tweak things to try and improve your setup.

It took me 6weeks post PM to really feel that things were settling down - although for me, having A/V synchrony restored was a big improvement that I felt within days.  Having AFib, or episodes of AFib complicates things, but if you can sustain a normal A=>V activation (aided by your PM) that will help a lot.

A lot of your posts focus on the technology, or disease symptoms, and not on what you want to do but can't.  I completely understand this, but it's the wrong approach, IMHO.  It starts to let the disease define you, which is a mistake.  Folk who are much smarter than me refuse to allow themselves to be defined by their illness (whatever it may be) and live their lives in their own way, despite their long-term problems.  Tell us about your bike rides or or hikes, dance classes, walking up hills/stairs and what you felt, experienced, how good it felt to knock the punch-bag around to work off some frustration!

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