Rate Response, new pacemaker

Hello there,

I have read quite some information since my pacemaker implant 2 weeks ago. The forum is a really helpful resource for the recovery period.

I have a question related to rate response.

I was diagnosed with a 2nd degree heart block almost 20 years ago. Since then I went back to the hospital for a 24 hour holter every 1-3 years. Always with the same result, a few blocks during the night.

I'm completely asymptomatic. The finding of the AV block was by chance as a side catch of some other procedure. So not dizzy, fainting or any other problems related to the heart.

2 years ago a acquaintance got a heart attack which made me worry a little bit.

My cardiologist proposed to insert a reveallinq device to just monitor my heart for a longer than 24 hour period. So for 2 years my results were send on a daily basis to the hospital.

The recordings over the last two years were the same as the 24 hours recordings, some 2nd degree blocks when I'm asleep but also 4-6 times a year, one complete heart block during the night. Max pause 3.8 seconds, never 2 episodes after each other.

Based upon these findings I agreed to have a pacemaker implant. I was very reluctant because I seem to have the same pattern whole my life. Also not all cardiologist agreed to give me a pacemaker but anyways...In the end I agreed to do it.

My biggest worry was that, being fully symptom free, I would end up with a device giving me symptoms..I saw my father struggling quite a lot with his pacemaker settings.(he has af, no av block like me)

Already quickly after my pacemaker implant I started to feel sickish. I felt the pacemaker firing, irregular heartbeats, pumping feeling, dizzy...just weird. sometimes 10 minutes, sometimes a few hours.

At first I thought it was just stress because of the pain and the surgery. Until it got quite bad last friday.

Called the hospital, went over and indeed I saw on the monitor the artrial pacing of the heart with the same weird feeling in my chest and head.

Unfortunately last friday was a holiday in the netherlands and they had no clue about my pacemaker settings and the pacemaker technician was not in.

We talked about rate responsiveness and the lead probably also stimulating the diaphragma(?) nerve. I only know my base rate during the day (40) and during the night (38). My natural heartbeat (cyclist) is around 42. Very active sporter.

Now the latter I get but I'm lost on why they would have turned on rate responsive pacing in my case. 0 symptoms day or night, 0 times a block during activities and never any problems getting my heartbeat up.

Upcoming week I have a ln appointment with the technician. Hopefully we can talk freely abput these things as I noticed my father walked into a wall of dogma's.

4 Comments

New pacemaker

by piglet22 - 2023-04-09 10:59:53

Hello

You will get far better replies than mine, I'm sure.

Firstly, you are getting symptoms, albeit during the night.

There are many types of heart block. I have Mobitz. Mobitz can start symptomless and can need no further treatment.

However, I was told early on that it would probably get progressively worse and it did.

I'm now close to196% out of 200% complete pacemaker dependency.

I too use to cycle a lot and pre-pacemaker (PM) I was noticing spells of low heart rate and in particular exercise wasn't raising my heartrate. I'm not as fit as you and my usual exercise rate in the 80s' and 90's was dropping to between 30 and 40 BPM.

I would go with what the cardiologist advises and let them sort out the best settings for you.

I can understand that having been so fit, it comes as a bit of  a shock to find that all is not well, but on the plus side, heart malfunctions of the electrical variety are eminently fixable.

Good luck.

I kept cycling happily post PM, but head versus tarmac and too much dangerous traffic reduced my cycling days to long walks.

Any Problem with your Sinus Node?

by SeenBetterDays - 2023-04-09 11:06:12

Sorry that you are feeling these disturbing symptoms since your implant. I can see how difficult a decision that must have been, particularly as you were asymptomatic before the pacemaker. At least you now have the reassurance that the device will fill in the pauses you have been experiencing at night. Though I absolutely understand why you would have been hesitant to go ahead with the surgery. In terms of rate response, my understanding is that, unless you have an issue with the function of your sinus Node, which is effectively your heart's natural pacemaker, you wouldn't need this setting. I have AV node block so have my rate response switched off so that my pacemaker can send a signal to activate my ventricles following my natural atrial contraction. If you have rate response switched on without needing it I can imagine it would create some uncomfortable symptoms so absolutely speak to the technician about this just to make sure that this is appropriate for you.  I would also add that settings can take a while to determine and early in the process your heart will be adjusting to the pacing so may well give you some irregular beats during the healing process. That may take a little while to settle. I hope you are able to have a detailed and helpful discussion at your next appointment. I always have my list of questions with me when I go in as otherwise I know I will only kick myself for not remembering to ask something I needed clarity on. Good luck and hope you are feeling better soon and are able to enjoy your cycling again before too long.

appointment hopefully soon

by drmz - 2023-04-10 09:06:37

Thanks for the extensive comments. Hope the talk with the technician goes well. I indeed have no sinus node problems. So hopefully this will be adjusted. Still strange they didn't edit the default settings having 2 years of daily recordings. All nightly recordings mention AV block with intact sinus rhytm.

I feel there is a big disconnect between the departments somehow. Needed to push in my natural heartbeat of 40 as well while with  2 years of daily recording data that info is readily available.

The person doing the pre-op talk even didn't know I had an implantable recording device for the last 2 years. 

So seems that some talks that imho should happen pre-op actually end up being done post-op. Guess for the hospital it's also applying principles that suite the highest % of ppl.

had my checkup

by drmz - 2023-04-11 06:48:04

Had my checkup early today. After a call they wanted to see me earlier. Very nice & open talk with the technician. Really helped me in gaining some trust there in being able to build a good relation with the person. 

My rate response was set to off during the implant. So the info given last friday was incorrect. 

We went through all the settings and in the end they lowered to PMT track rate setting to get me out of a PMT when it occurs. They also changed the 3 times a day treshold run to 1 time a day, because I could really feel the test run.  They didn't see on the report that a PMT occured although the way I desribe the symptoms sounded like a PMT to them. 

My lower nightly rate was set (during implant 2 weeks) at 35 and my daily rate at 40. They are actually a bit lower than my natural rate. The lowest rate during the last 20 years with a intact rhythm was 42. 

Atrial pacing % was 1.5%, ventricular pacing was around 0.5%. The atrial pacing % is a question I will ask them when I have the next appointment. They ran so many test on me that I was quite tired afterwards.

Although the percentages are very low I still find them relatively high looking at all the previously recorded ECG data (24 hours holters, 5 day holders. and the last 2 years an implant for daily monitoring). I can count my daily AV blocks on one hand. Guess the max I had in the last 20 years were 7 or 8 second/3r degree a day. Can't see my HR fall below 40 or 35 as well. So bit puzzled about the 1.5%. 

But anyways, step by step. First some relaxation :)

 

 

 

 

 

 

 

 

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I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.