New to having a PM

I definitely feel my device...

by R2D2 - 2023-12-19 15:59:43

I hope I can be of some comfort to you. My ICD was implanted on July 17 this year. I was told similar things that I shouldn't feel the therapy and pacing but... I DO. Then I met with the tech that adjusts my ICD levels, how sensitive it is and heart rate. He told me that while a lot of people don't actually feel much of anything, some people do. And it's actually helpful for the tech as well as the doc that implanted it because they can use those sensations to better adjust your settings.

I had to join this club to learn what pacing is because none of my doctors told me anything about that. So every time I felt those sensations, it was like someone gently flicking my heart, I would immediately start to stress. It was a very unsettling experience for me and I was much happier when it didn't do anything. However, pacing is something that this device does, and every time you move around, the pacemaker will adjust your heartbeat to match your activity level. I didn't realize that with a heart as weak as mine (Ejection fraction: 16), my pacemaker would be pacing a lot. I assumed if I could feel it, that there was something wrong and the device was correcting it. But that's not the case. Pacing is something that happens most of the time with our devices and it's supposed to do that. When I realized there wasn't anything wrong and that my pacemaker was just helping my heart beat faster or slower because it is too weak to do that by itself, then I felt much better. 

After several months, when the scar tissue has had a chance to form, the sensations will be less noticeable, but I still feel mine after 5 months and was told that wouldn't happen either. I also still have pain around my device but the ICD is bigger so I'm not sure if it takes longer for that to get better or not. What I do know is that every day there is some sort of issue with my healing process. Pain that comes and goes, anxiety (especially since I got my first shock two weeks ago), random twitches, left arm pain that still comes and goes, and other misc. symptoms. 

Hang in there with the strange sensations, we all have them and you're not imagining things. They put a device in your body that gently sends little shocks to stimulate your heart to beat better. Frankly, I don't understand how anyone CAN'T feel that, but then, I still don't get how a woman can deliver a baby and never have felt anything. (shaking my head?) 

Fluttering

by Penguin - 2023-12-19 16:27:10

Hi and Welcome to the Forum, 

With a 3rd degree AVB diagnosis you will be receiving rather a lot of ventricular pacing.  I don't have your diagnosis and pace mainly in the atria but when my pacemaker was first implanted it also paced from time to time in the ventricles.   This feels different.

Ventricular pacing feels exactly as you describe it - like a prickly sensation.  

When you first get your device they turn the amount of current up initially to help the wires bed in.  This can mean that the sensations are a little stronger for a while. 

When you lie on your left side you may feel it more. 

I think that this is what you are describing. It sounds like the most likely explanation to me. 

I'm told by forum members with your diagnosis that they are able to tune out the sensations of v.pacing as time goes on and they get used to being paced.  You may also find that the mini shock like sensations improve when the current is turned down after a few weeks. 

If you're finding it very uncomfortable you could ask for the current to be turned down a bit at your first appointment. 

Best Wishes

I have it too

by Aintgotrhythm - 2023-12-19 17:06:34

I'm not at all sure that it's "normal" but I have it too. I routinely have an odd "fluttering" sensation in my chest and also a periodic "gurgling" sensation (I'll try to describe further) that makes me cough.

The gurgling sensation is really hard to describe. The best I can do is it feels like I've swallowed an effervescent tablet ("alka-seltzer" here in the states) and it's fizzing in my chest. Not that strong but noticeable and as I said it makes me cough.

I've an appointment on Thursday with my EP and a Boston Scientific rep. The main thing I'm going to see if they can correct is periodic HR spikes during light activity but I'm hopeful that I can get these symptoms addressed in the future.

Fluttering etc

by piglet22 - 2023-12-21 07:33:32

In an ideal world, getting a corrective device like a pacemaker should restore normal functioning.

Now and again, something comes through that the device cannot correct - ectopy is a good example - and these can appear if or when your condition deteriorates.

The fluttering sensations are something you might have to get used to. I know exactly what you mean.

I sometimes get the "whoa" one that pulls me up sharp.

Sorry to hear about the car incident but it does illustrate what can come out of the blue.

We should always be prepared for the unexpected and that includes driving, climbing stairs and even getting up from sitting. Pacemakers are good, but not perfect.

Forceful flutterings

by Xtrabeat - 2023-12-21 15:12:45

I have had my pacemaker for almost exactly a week and I have had strange sensations most days. Occasionally large heaves that almost make me jump and quite a lot of ectopics. I went back to the cardiac technician who made some minor alterations and slowed the response threshold. This as stopped the beats at night but I am constantly vigialnt. On testing it seemed that some of the strong sensations occured when the atrial lead "fired" and somewhat to my surpise I was told the device had been working 17% of the time. I monitor things on an Apple watch - in fact this also made the diagnosis of intermittant complete heart block when I became very faint. I feel I am at the bottom of a very steep learning curve and trying to get as much information as possible.