"Poll" - what sensations have you had from your pacemaker pacing or running tests?

Sensations

by piglet22 - 2023-08-05 08:38:45

I would include end of life (pacemaker battery) pectoral and arm muscle twitching.

In 2016, I was sitting quietly at home when my pectoral muscles started twitching, then involuntary left hand arm movement. It started as sensations directly over the site of the PM and soon spread to my left arm. PM is on left side.

I was coming to 11-years on this first PM and on 3-monthly in person checkups.

The twitching was exactly in time with the PM pulse of 60-BPM.

To cut a long story short, I ended up in A&E, saw one of the physiologists past midnight who confirmed a mode change and made some adjustments that stopped the twitching.

About 8-hours later, the PM was replaced.

Some might be sceptical about external pulsing and one senior ambulance man said a PM couldn't stimulate muscles. Heart muscle?

What tells me it was, is the timing synchronization, heart and left side muscles, and the fact that altering the PM settings reduced or stopped the twitching.

They didn't tell me what the battery voltage was, but after all those years, it must have gone low. One physiologist remarked "We had you on our radar". This was pre-home monitoring and all checks were done in person.

The other sensation which is common for most PM users is the slow heart rate test where they either turn down the base rate or maybe examine what remaining natural pacemaker function you have.

Some people don't notice it, I do and my notes include the fact that I am sensitive to that test.

Only noticed it with an external pacemaker

by atiras - 2023-08-05 10:49:46

The only time I've ever felt the pacemaker in operation was recently when I had a temporary pacemaker for a couple of days (external box, wire through the neck to lie adjacent to the heart -- not 'screwed in'.) Every time it paced me at 90bpm, I could feel it, and it was very reassuring.

Sensations

by Gemita - 2023-08-05 11:35:05

John I should point out that your post “Poll” - what sensations have you had from your pacemaker pacing or running tests? is not an official “Pacemaker Club Poll” question, since we have only just started a new one. Your question though, would make an interesting “future” Pacemaker Club Poll question, if you would like me to add it to the list?

On your specific question:  what sensations have we experienced from our pacemakers "kicking in” during pacing, is difficult to answer since I cannot always differentiate between the sensations caused by pacing itself from those caused by my electrical disturbances which required pacing support in the first place?

I am deeply symptomatic during "ventricular" pacing for example as well as during any electrical disturbances.  Many are like me highly sensitive to pacing and to electrical disturbances, but some of us do not experience difficult symptoms at all whatever the cause/trigger.

Speaking from personal experience, when someone has electrical disturbances of the heart, I don’t think it will ever be easy to say with absolute certainty just where that sensation/feeling is coming from:  pacemaker or from the chaotic electrical disturbances themselves?    For me it is the electrical disturbance that comes first, that is often the trigger for many post implant sensations which may require frequent pacing adjustments, mode changes, decreases/increases in pacing, adjustments to lead sensitivity settings and so on. 

Electrical disturbances may affect the timing of our pacemakers, as can pro arrhythmic medication.  We may need to frequently adjust those settings, leading sometimes to pacemaker induced tachycardia or other symptoms.  I have had diaphragmatic flutter sensations from my palpitations (not caused by any lead stimulation) but I have also had diaphramatic flutter from my leads themselves so both can be present at the same time.

It so depends on the level of feeling/symptoms a member may experience.  Some members are so hyperfocussed on these matters, while others who may be experiencing similar symptoms, will be able to ignore any muscle twitching/stimulation from a high setting, or heart rhythm disturbance which can be so very common following implant.   

Feeling it?

by Gotrhythm - 2023-08-05 15:21:09

What you feel is always real.  I would never tell you that what you are feeling isn't real. But I very much doubt if what you are feeling is being caused by the pacemaker.

I can't possibly say what you're feeling, of course, but I suspect it's PVCs. Why? Because PVCs are common, even "nomal." And feeling the pacemaker working is very rare.

I personally have never had any heart sensations which I could identify as arising from or being caused by the pacemaker. It was kind of a surprise to realise that I couldn't feel it "working."

Although I know that some unlucky people have phrenic nerve stimulation, or sensations in the diaphragm due to the pacemaker, my understanding is that the problem is rare.

In the thirteen years I've had a pacemaker, I've experienced a whole alphabet of arrythmias and the heart sensations that go with them. Except for PMT. they are all things that happen despite the pacemaker, not because of it. (Technically, the pacemaker doesn't cause Pacemaker Mediated Tachycardia. It happens because a rogue electrical circuit comes from where it shouldn't and throws off the timing of everything.)

I would urge you at your next pacemaker interrogation to watch the EKG on the tech's screen. See if you can correlate what you feel with what is showing on the screen. That's how I learned to identify my PVCs. Ask the tech to point out which beats the pacemaker is initiating and which ones your heart is doing on it's own. See for yourself which beats you feel and which you don't.

In the future if you wish to know if others are experiencing what you do, simply ask that in a post. Calling your enquiry a "poll" is misleading since we do have official polls from time to time.

I'm sure Gemita, et.al., will be happy to have your input on any official poll you would like to see. I expect they'd also be happy to have your help with all the work putting together a poll entails.

Addendum: I have now read though the other posts which have come in over the days I was gone. I see that you have managed to catch some EKG tracings coincident to the "twitches'" you experience. Does the EKG you are using show the pacing spikes?

Now you need someone experienced at reading EKGs to identify what you have captured.

Not a poll, apologies if overstepping

by John_Locke - 2023-08-05 16:33:13

Thank you Gemita and Gotrhythm, my apologies if the subject of the post appeared as misleading, I was hoping that the use of quotes would show that it's not an official poll. What I'm interested in here is simply the long form description of people's experience.

I would indeed love it if you could set one up though!

Gotrhythm, thank you but I have to disagree on this one

by John_Locke - 2023-08-05 16:40:53

I do get PVCs - and this sensation is different, not something I ever had before the pacemaker. I can understand that you're skeptical, as was my EP, but I've now got myself a wearable (consumer) ECG, and every time I feel this "tick", there is proof of a distinct paced beat, see https://www.pacemakerclub.com/message/43507/the-pacemaker-twitch-sensation-now-on-ecg.

I felt

by PacedNRunning - 2023-08-07 03:19:19

In the beginning, I felt thumping, flicking, vibrations, tapping etc. once they turned the energy lower. It got better. I think with the daily tests. Most people believe it or not do NOT feel pacing. We are in the minority. When I paced intermittently, I felt it more than I do now. Once I became 100% or at least 70% paced, I no longer felt it as much. I did feel the dang daily tests. Every 21 hours to the minute. I had them turn it off. My guess is why they don't tell us, is because most do not notice pacing.