Turn off Pacer after 1 year

Dear All, I am 56 and was given a pacer a year ago for 2-1 AV heart block. Prior to pace I had no symptoms except for some mild exercise limitation (I would get out of breath when running).

Post pacer I have fatigue, constant cough, and echo shows my ejection fraction has gone down (heart less efficient). General health declined and stayed worse for a year.

I am thinking of having the pacer turned off to see if my overall
health improves. Of course I understand this runs the risk of
fainting or worse, but I was undiagnosed for years and had no problems at all, especially none compared to what I have now.
Even stopping it for a week would be a useful experiment.
For example it would show if cough/fatigue are directly
related to pacer.

Has anyone had any experience with turning off their pacer,
short or long term?
Any thoughts or comments are appreciated!

7 Comments

Extra lead, more background, etc.

by 2for1 - 2014-09-10 03:09:55

Dear Inga et al,

Many thanks for your helpful comments. What Inga describes is exactly my situation: RV pacing resulted in decreased EF. Putting in a 3rd lead is on the table & I will be getting a 2nd opinion (from an electrocardiologist) about that this month (it's not something I'd like to do!)

As for the cough, it has been thoroughly studied (CT scan with contrast, inhalers, atropine stress test, etc.) and no cause has been found (pericarditis and sarcoidosis have been ruled out or deemed unlikely).

I have not heard of MVP mode and I will check into it. Right now I am pacing 100% of the time, I think the mode is something like DDR. I was also not aware that the pacer could be turned down & will ask about that.

Any further comments welcome.

turning it off

by Tracey_E - 2014-09-10 08:09:42

Most drs will not turn it off. Some can't for legal reasons but most won't do it for your own safety. You might be able to get them to turn it down, that would be a better place to start.

Have you been checked for pericarditis? That would cause a cough. Also look into pacemaker syndrome, but please don't go self-diagnosing!! That's generally something that develops over a lot longer than a year so it's highly unlikely. Have you had a second opinion? I'd start there, see if fresh eyes can find something. I'm no dr so this is just a guess, but it doesn't sound like fixing a block with the pm is related to what's going on. It's easy to blame the pm because of the timing, but the symptoms don't match up with what a pm can do. It's possible that the block was just the first symptom, that these other things would have come on with or without fixing the block.

A lower ejection fraction would make you tired. It's unlikely that's caused by the pm, however, because EF is a function of how hard your heart beats, how efficiently it moves the blood through. All the pm does is make the signal to beat. It's up to the heart to contract and make the beat.

Have you seen the interrogation report to see how often you are pacing?

(chuckling because the spam code is WTF)

Without Pacemaker

by donb - 2014-09-10 09:09:08

Hello 2for1, In my 22 years of pacemaker experience I have had mine removed because of erosion twice, Ist time for 60 days years ago. Last year again for 30 days. As I'm not pacemaker dependent but have electrical block causing intermitant very low HR at rest. Removal of my pacemaker both times resulted my heart to return to the same problem after the above time span. As I've learned from others that has been a normal experience.
DonB

Pacemaker and heart failure

by golden_snitch - 2014-09-10 12:09:49

Hi!

It sounds a lot like you are one of those patients whose EF decreased due to right ventricular pacing. It's a well known problem. Not every patient who is paced a lot in the right ventricle goes into heart failure, but there have been and still are so many, that this has become a hot topic for doctors and manufacturers alike. Doctors are trying alternative pacing sites than the apex of the right ventricle, for instance the intraventricular septal wall or the His Bundle. Manufacturers are developing pacemaker modes/features that shall help to reduce ventricular pacing in those patients, that suffer from intermittent blocks and do not need to be paced 100% in the ventricles. Your Medtronic Adapta already had a very effective mode called "MVP", that makes sure you are paced in the ventricle only when absolutely needed. I'm not sure, though, whether this mode has been activated in your pacemaker. If not, I'd give it a try.

Usually, when someone is diagnosed with pacemaker induced heart failure, the consequence is to put in a third lead to resynchronize the ventricles. I know from your last message that this has been mentioned by your doctor as a possibility. Any news on that?

If you were not symptomatic at all before the pacemaker, it might be worth a try not to completely switch it off, but to turn it down a little. For instance, once could program the base rate at 40bpm or even 30bpm, and see how that goes. However, I'm not sure that once the EF has dropped that much, it's actually an option to let the pacemaker do less work. As I said, normally, you'd now be a candidate for a third lead (CRT device). Not sure that the EF would recover when you switch the pacer off now, and if it doesn't recover, your symptoms would not disappear.

Inga

MVP

by golden_snitch - 2014-09-11 02:09:10

Hi!

In your first message on this board you wrote that your 2nd and 3rd heart blocks were intermittent. With intermittent blocks you should not be paced 100%, especially not if the MVP mode of your pacemaker is switched on. If you are in DDDR mode, the the MVP mode is switched off. MVP modes are: AAIRDDDR and AAIDDD.

The difference is that, while being programmed in DDD the pacemaker will basically pace you out of each and every single heart block. This is not necessary in intermittent 2nd degree heart blocks. You had hardly any symptoms before the pacemaker was put in, so I'm sure you could tolerate a skipped beat here and there. When intermittent blocks and long PQ-intervals appear in MVP mode, it allows some of these blocks to just happen (skipped beat), and only starts pacing the ventricles when a certain number of blocks occurs in a certain period of time. Not sure, but I think in Medtronic's MVP it starts pacing the ventricles when every two out of four p-waves are blocked, so basically when every second atrial beat it blocked.

I had a very similar mode in my old Sorin pacemaker. While being in that mode, I had usually just 2%-5% ventricular pacing (intermittent heart blocks of all three degrees), max. 10%. When I was programmed in DDDR on the other hand, I ended up with 30%-50% ventricular pacing or more. Just to give you an idea of what these special modes can do.

Again, I'm not sure that, now that your EF has already dropped, trying to reduce ventricular pacing will help. Best you discuss this with your cardio or the new EP.

Best wishes
Inga

Wires (2 now, go to 3?)

by 2for1 - 2014-09-11 12:09:08

Dear All,

Thanks again for your comments. Re my current pacer, it has 2 wires, 1 in right atrium, 1 in right
ventricle (at septum). My atrial rhythm is natural, the device is set to pace ventricles by right atrium rhythm.

The idea of "upgrading" my pacer so it has a 3rd wire which would help pace the left ventricle has been suggested by my electrophys. as an option. I am looking for first, other non-surgical options that might be tried, and second, for a way to test if my persistent cough (which started post-op a year ago) is begin caused by the pacemaker. (Of course it might be caused just by the physical presence of the pacemaker, not its electrical activity, which would be hard to test).

How many wires do you have?

by PacerRep - 2014-09-11 12:09:21

1 or 2? If you are pacing from the ventricle it might be Pacemaker syndrome. Ask for AV sequential pacing, and if appropriate possibly upgrade to a CRT device (3rd wire). Get the info and we can discuss more

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