Don't know what to call it

In October of 2013, due to pacemaker syndrome, the ventricle lead of my dual lead pacemaker had to be turned off.

Now, between 30 and 50 times a day, my pulse rate, measured by a forefinger pulse-oximeter, drops to 33, stays there for 3-4 seconds and climbs to the preset rate of 65 over a period of 10-15 seconds. The pulse-ox falls too, but only after the HR drops.

The feeling I get is sudden, overwhelming exhaustion, lightheadedness, and difficulty paying attention. My little home-use-only HR/pulse-ox-thingy might not be completely accurate, but it's very consistent, and corresponds to what I am feeling.

My understanding is that my pacemaker is working fine, initiating the atrial impulse right on time, but instead of responding, the ventricle is messing around with PVCs. The actual blood moving force of the beat is reduced, and some beats are "skipped."

Yesterday I encountered yet another cardiology person who told me, in people with pacemakers a drop in pulse rate was "impossible." Her objection, after I explained about the PVCs, seemed to be to the word "pulse."

She wasn't the first to call what I report impossible. It might be that my choice of words confuses medical people. But I am tired of reporting what I observe and being told it can't happen. I'm tired of feeling like instead of being listened to, I have to defend myself.

So here's my question. Has anyone else experienced this phenomena? Were you able to communicate about it? If there is a proper medical terminology for this phenomena, what would it be?

And hopefully, someone with a scientific understanding of the device can explain what my little finger attachment really measures, if technically, it's not the pulse.

4 Comments

makes sense

by Tracey_E - 2014-04-03 05:04:43

On the surface, no, someone with a pm should never have a drop in pulse. However, your pm is only working with one lead. The pm is making your atria beat just like it should, but with the ventricular lead turned off it's up to your heart to do the ventricular beat. The ventricular beat is what we feel as our pulse.

Did you feel better before the lead was turned off? Sounds like it might be a matter of choosing the lesser of two evils. Have you had a second opinion on the pacemaker syndrome? Some drs are better than others at fine tuning the settings. It may be fresh eyes would have a solution to give you the ventricular pacing you need without whatever was going on before the lead was turned off.

Pulse oximeter is the most accurate way to measure pulse at home.

St Judes has some terrific animations that explain how the heart beats and what the pm does.
http://health.sjm.com/arrhythmia-answers/videos-and-animations

You've got Rhythm......

by donr - 2014-04-03 10:04:16

.....who could ask for anything more?

Curious - why did they just turn the Ventricle off - why not exchange the device for a CRT type to fix it?

My experience w/ Pulse -oxi thingies (THAT is the correct technical term for the device) & PVC's is that they are notorious for missing them in the count.

This Monday I was at Cardio Rehab & the tech took my pulse by finger & a sweep second hand. She finished & announced proudly "64!". I told her "IMPOSSIBLE, I'm paced at 75 & my PM is functioning." She replied that she'd only felt 64, so I told her to go back & do it again, looking for the wimpy beats of the PVC's. So she did & came up w/ "74!". Quite proud of her little old self. When asked, she admitted to sensing some wimpy PVC's in the pile.

The reason the P-O Thingy comes out at 33 (or thereabouts) is that it calculates HR based on elapsed time between beats. IF you are paced - and have a single PVC that the P-O-Thingy misses & the elapsed time doubles - making the HR come out to about 33 - which is about half of 65. So everything is, indeed, making sense, including you & your reporting..

OK, so how does the P-O-Thingy work? There is a red solid state light emitting diode in the top that shines down through the nail & reflects off the surge of blood that passes that spot every time the heart pumps. There is a sensor in the top of the Thingy that detects the change in the light as the blood surge passes. The color of the blood depends on how much O2 is in it (O2=Oxygen. The more O2, the redder the blood. The blood starts to shade toward blue as the O2 level decreases) & the sensor & its digital electronic circuits can determine both your HR & the amount of O2 by that reflected light. It's just as magic as your circuitry in the PM.

Now, if you really believe that the true technical name of that device is what I called it, I'll make you a great price on a bridge across the Chattahoochee River, leading into Atlanta, Georgia - you'll make a fortune off of tolls. It is called a Finger Pulse-Oximeter (or Pulse-Oxymeter.)

One last thing. The reeason the PVC occurs & is uncorrectable by the PM is that it comes EARLY. The PM cannot predict the future, it can only correct for things that will be late or not occur at all. So even thought he PM misses it, that pulse is really there - just wimpy & early - actually, it's wimpy BECAUSE it is early & the ventricles are not fully charged w/ blood. So as it moves through the circulation system, there is a section of blood in the stream that winds up slightly lower in O2 concentration by the time it gets to the fingernail - the far turnaround point in its journey from the heart. Consequently, the P-O may not sense that it was even passing by. Or, the pulse taker w/a finger on your wrist, if inexperienced, may not sense the wimpy pulse as it goes by. Now, if you are going to ask me how can that happen, I'll tell you that it happens because the blood vessels are NOT rigid. They are flexible & elastic. The blood is a liquid & incompressible. Each time the heart's Ventricles pump hard, they force a big slug of "High" pressure blood out that expands the artery that it is in, locally. As that slug of high pressure blood moves along & the heart stops its pumping, the pressure drops & the artery squeezes down to a smaller size behind the lump. So you have a whole series of "Lumps" of blood passing down the system. By the time it has flowed all the way to the end of the line, been through the capillary system & collected in the veins, the lumps are smoothed out pretty well & there is not such a pronounced series of lumps of blood in the veins. Technical enough - not for my cardio, but it explains what happens in a simplified way.

Donr

DONR--one more thing

by Gotrhythm - 2014-04-04 03:04:56

You said: Curious - why did they just turn the Ventricle off - why not exchange the device for a CRT type to fix it?

Answer: I don't know. I had terrible pain whenever the PM ventricular function kicked in. It seemed to happen when the ventricle was doing PVCs. Since the ventricle didn't really seem to "need" pacing frequently, turning off the lead seemed simplest. Other options were not discussed with me.

Thanks TraceyE and DONR

by Gotrhythm - 2014-04-04 03:04:59

What a wonderful thing information is.

Thanks to your explanations, I feel I have a better grasp of what's happening, and maybe I'll do better the next time I'm trying to communicate with med professionals.

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Yesterday I moved to a new place in my mind and realized how bad I felt 'before' and the difference my pacemaker has made.