Chronotropic Incompetence

Because of insurance changes I am beginning a relationship with a new cardiologist and electrophysiologist. Went to see the new cardiologist for a check up/consultation and found out I have a condition called chronotropic incompetence. I have been experiencing a great deal of exercise intolerance, fatigue, shortness of breath, etc for about a year and a half and my other cardiologist mentioned nothing of this condition. I see the new electrophysiologist next week and I am to go in fasting in case he decides to replace my pacemaker. I currently have a Medtronic ADDR01 dual chamber. From what I have been reading, this pacemaker is not sufficient for CI. Anyone have any advice or ideas of questions I need to ask the electrophysiologist. I am at 7 years with the current pacemaker and probably due for a battery replacement here pretty soon so if he wants to do a new one, I'm thinking that won't be a bad idea. Thanks for any input.

6 Comments

Hi lilly

by IAN MC - 2014-12-26 03:12:40


I think you will find that your Medtronic ADDR01 can be set to manage chronotropic incompetence. It has a " Rate Response " feature which is usually switched off as the default setting.

As soon as they activate RR for you, your PM will put in extra heartbeats when you exercise so your exercise intolerance should improve immediately.

Best of luck

Ian

rate response

by Tracey_E - 2014-12-26 08:12:53

Definitely try to adjust the settings on what you have before replacing it! Most people do just fine with CI and basic rate response. There are some models that handle it better than your Medtronic, but that's mostly those who bike. Even if he decides to replace it, I would not even consider it on the first visit. Go over how you have been pacing, see what your settings are, get to know the new dr. If changing the setting doesn't help, then talk about changing it when your battery needs replaced. It's unlikely insurance will cover it sooner.

What was your original diagnosis?

Thanks

by lillykaiser - 2014-12-26 10:12:34

Thank for the input. Unfortunately they turned the rate response off on my pacemaker about 2 years ago because it was coming on when it wasn't supposed to, like driving down the road. Every time I hit a bump the dang thing would kick on. I was also having a significant amount of junctional rhythms so they turned it up from 60 to 80 and I have been pacing at 80 ever since.

My original diagnosis was sick sinus syndrome. Had an ablation and then 5 days later started having bradycardia and sinus arrest of about 10 - 20 seconds, so I earned myself a pacemaker. Had another ablation about 18 months later and then diagnosed with autonomic neuropathy which apparently was really the main cause of all that was going on in the first place. I haven't really felt good since. I just kind of live with the symptoms, but lately it's really bad and hopefully this new doc can figure it out.

Rate Response

by lillykaiser - 2014-12-27 06:12:59

We played around with the rate response for about 3 weeks and then the doc finally decided to turn it off because it never would do what it was supposed to do. I wore an event monitor for about 3 months which is how they detected the junctional rhythms. It just seems that there has been one problem after the next since that first ablation. Here we are 7 years later and still jacking around with this dang pacemaker. I had a short stretch of time after the 2nd ablation where everything seemed to be operating correctly and I felt good. For the most part however I feel fatigued and wiped out most of the time. Thanks for everyone's advice. Lots to think about when I see the doc on Wednesday.

bumps

by Tracey_E - 2014-12-27 09:12:35

There are a number of sensitivity settings associated with rate response. Did they try to tweak it or just give up and turn it off? Often they can find a balance where it will go up on exertion but not every time you sneeze or drive a bumpy road. Junctional makes everything more interesting. Good luck with the new dr! Many of us are unique patients and our drs don't have anyone else like us so it makes a world of difference when you have a dr willing to do some research and really keep at it until we feel better.

When it's time for replacement, look into the ones that use your breathing as well as motion to determine when to pace faster. That's why I mentioned biking before, people with CI who bike struggle with basic rate responses because the torso doesn't move enough to set it off. The ones that use your breathing are less likely to be tricked by a bumpy road or miss exercise like biking because they also sense your breathing. If you do a search for minute ventilation or CLS, lots of discussions should come up. Look for Inga's (golden_snitch) comments. She can explain it better than most drs.

As Tracey says

by IAN MC - 2014-12-27 10:12:37

.. there are different sensitivity settings for Rate Response . The Medtronic model which you have has four activity threshold settings :-

LOW - Responds to most body activity, including minimal exertion
MEDIUM/LOW - Limited response to minimal exertion, responds to moderate body movements /greater exertion
MEDIUM/HIGH - Limited response to moderate body movements and exertion
HIGH - responds to only vigorous body movements and exertion

The way you have described it, minimal exertion or even hitting a bump in the road was triggering your RR. Your PM 's rate response may have been on the LOW setting

So one of the questions you need to ask your electrophysiologist is whether he has tried different activity threshold settings ; it may or may not work and there's only one way to find out !

Good luck

Ian

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