Sudden change in HR from long time patterns right after most recent routine 90-day pacemaker check

Pacemaker Settings

by steppingstones - 2019-08-20 12:11:25

I have been living through an ordeal with my settings.  I had been feeling terrible pretty much all the time and blamed it on other medical issues.  I had called the EP office and asked for an appointment which they didn't acknowledge.  Anyway.....I pulled my entire medical records from that EP office and compared the last 7 months as to when I thought something happened.  FOUND IT!!!!  I am 100% paced on each ventricle and was 96-98% paced on Atrial until sometime between Nov 2018 - and Jan 2019.  My Atrial dropped to 80%.  So I was missing about 15 beats a minute on my atrial. My heart was really struggling, my atrial is enlarged and started with a-fib episodes.  Because my pacemaker said it was delivering 70 bpm was all they cared about.  I had to prove the issue as they would not take my word about the change.  I went in armed with my copies of their reports with the red pencil marks and of course they have no idea how the changes came about. 

Also, don't hesitate to call your PM maker. 

Good luck, be your own advocate and make them listen to you.  I suggest EVERYONE pulls their medical records.  It is amazing what you may find.

Why you need to ask for and receive a copy of all interrogation printouts

by Gotrhythm - 2019-08-20 19:02:37

It's hard to say for sure, because I don't know what your settings were, but my first thought is to wonder if your pacemaker has dropped all the settings tailored for you, and gone into the default setting, which is 60bpm.

If your base rate is 60bpm then it's possible rate response has been turned off, and that's why there's little or not enough increase in hr with exercise, and no change when you roll over at night.

Your story is a good example of why it is wise to know what your settings are. And why it's always a good idea to ask for a copy of the interrogation report. If you get pushback, be polite, but stand your ground.  You are only asking for what you have paid for.

What to do now. Until you are sure the pacemaker settings haven't changed, it makes no sense to have a bunch of expensive and possibly invasive tests. Go to the EP. Demand, politely, that they redo the interrogation to determine if the settings now are the same as three months ago. Don't take their word. Make them show you the interrogation reports.

And don't fall for "We can't show you because you can't understand." Sure, there's lots there that you probably can't understand. But the information about your settings? Any body with an eighth grade education can read and understand those numbers.

Don't leave until you know what your base rate is, what the upper limit is, and what the repsone rate function is doing.

Belated Thank You to GOTRYTHM and STEPPINGSTONES and follow up on their suggestions

by HikerDave - 2019-09-05 04:32:25

My wife and I experienced deus ex machina 9/3 with the communicative MD (the "plumber" we have a lot of confidence in) who did my stents and TAVR in12/2015 and in 5/2016. He completely surprised us at the very end of our office visit by sending back in to us (as we were about to leave the exam room without "an answer" to my seemingly switched on breathlessness ) the tech who had interrogated the PM minutes before and had left the exam room, job done. The tech said he came back in to turn rate response back on (!!!) and that they (who?) didn't know how it came to be off.

That turn around was a complete surprise to us by that time, though a device output change is what I had suspected all along--a setting change or even a PM failure coinciding exactly with completion of the 7/9 interrogation and the onset then of my HR fixity at or nearer to 60 and sudden increase in breathlessness. Gotrythm suggested that too.

The plumber had to have ordered that turn-on 9/3, probably after calling the EP. The plumber's  focus, after his getting a good interrogation to vindicate the PM (as I had insisted they check) there in his office 9/3, was always fixed elsewhere--on one cluster of about  6 successive PVCs (v-tach). Those arose while I was on telemetry (a monitoring routinely done every 90 days in the cardio gymn) just as I routinely and abruptly stopped/finished one exercise and was beginning another in July. I should but can't remember if that happened before or after 7/9 and, unfortunately, I left the gymn report with the graph with the plumber.

The plumber had thoughtfully listened to me and had just seen my changed "before and after" sleeping and exercise HR graphs again, just as he had in my previous visit several days ago--all that was pretty much as was covered in my account of the 7/9 change as in my OP above.

Following up you SUBJECT gentlemens' recommendation: It turned out that the EP had only brief a record showing impedances, sensing and pacing thresholds and percent pacing. The following results from the plumber's tech yesterday look fairly consistent with those from the last four interrogations by the EP (4 quarterly PM queries--all routine, I assume, going back a year and including the dubious query process on July 9): lead impedance (ohms), A and RV of 495 and 418 respectively; sensing thresholds (mV), P-wave and R-wave of 3.5 (vs. 2.2 to 2.5 earlier, the largest deviation yesterday) and 11.9; percent pacing (V/ms) A and RV 0.5/0.90 and 1.0/.40; percent pacing A and V (%) 96 (earlier 80-92, trending upward); Diagnostic Events/Episodes zero.

Upshot: EP's hand recorded PM data did not point to the cause of 7/9 change: no indication whether the rate response was on or had been turned off. Last night's sleeping HR and today's (9/4) exercise HR confirmed all of our suspicions: HRs with rate response "on" were back up to what they had been before rate response stopped--stopped, whatever the reason. Charitably, I can imagine that the Medtronics interrogation device and process might turn off rate response and that it must be switched back on "manually" after interrogation--or there was simply a faulty move by the EP during that 7/9 interrogation, after which problems arose immediately and were consistent.

As I understood the plumber, the EP had wanted an angiogram (and any necessary stents) preparatory to the EP doing what I think would be (another) attempt at ablation to stop or reduce beat irregularites like the v-tach, The plumber did not see, overall, a compelling reason for me to have the angiogram if I did not want to, though he is concerned about ANY v-tach. It was a bout of v-tach in the cardio-rehab gymn at that hospital that lead to the failed 8/2016 ablation attempt and my PM implant then.

All this is to document, to some extent, what you kind and informed commenters here at the club know. You must be your own advocate and you can't get much done without hard evidence that your providers know you want, hold and understand to some extent. In this instance, had I done what too many do, just go along with recommendations, I'd have already had the angiogram, probably with no significant adverse effect. All said, it is possible I could be better off now, live longer and better, had the angiogram and ablation attempt gone forward. But had results been bad, i.e., massive stroke or worse, and I still had mental capacity for remorse, I'd have kicked myself to emotional pulp for not waiting for something more than a few extra beats one time to take that surgery risk I'd have consented to and acknowledged. 

Thank you for the constructive comments and for reading or scanning to this point. Please excuse my failure to acknowledge your immediate responses right away. Inexcusable. I can say your comments shed requested light and firmed up a resolve to follow up on them.

HD