Anyone else feel the pacemaker pacing a lot?

I am a 40 year old female 4 weeks post op. I am 100% dependent on the pacemaker as I have complete heart block.  Everyday seems to get better but wanted to ask a couple of things to some of you who have had a pacemaker for a while.  I can feel what I assume is the pacing a lot. It is very noticeable at random times of the day regardless of how active I am and very noticeable when I lay on my left side.  Is this normal?  Will I get used to it or will it go away?  Also do you get used to having the pacemaker in the chest?  It almost feels like it is in the way when I move my arm and just uncomfortable.  Overall glad it saved my life and almost instantly my heart felt better!


6 Comments

I don't understand

by AgentX86 - 2019-10-30 14:08:22

If you're dependent then of course, at least your ventricles, are pacing a lot. All the time. Do you mean that you feel your heart beat? I almost always feel, or hear, my heartbeat but that has nothing to do with my PM.

Since this sensation is positional,  it could be leakage from your leads pacing muscle, commonly the diaphragm. This can often be helped by adjusting the pacing voltage. You should mention this to your EP and PM tech. It may be a simple tweak. If it really bothers you, call your PM tech right away.

Feeling pacemaker pulses

by IPGENG12 - 2019-10-30 15:46:51

I've been pacing dependent since 2015 when I had a pace/ablate procedure which deliberately gave me heart block (Ablation of AV node does that!).  I had a bi-ventricular pacemaker implanted.  The day after the procedure, I started feeling each pacing pulse in my back.  This turned out to be due to a slight movement of my left ventricular lead that gave me phrenic nerve stimulation that leads to diaphragm contractions.  They ended up turning the third lead off completely,  which was an option.  In any event,  based on your description you should definitely go back to your clinic to have it checked out.  Hopefully adjustments of the pacing pulse amplitude is feasible.  Ultimately,  my situation has gotten resolved so I don't feel any unusual pulses.

Need to be clear about what you are feeling

by crustyg - 2019-10-31 02:56:12

If you've gone from some low heart rate (complete heart block) to something more like 55-70bpm, then you may well notice that.  Many of us can feel every heart beat when lying on the left side - the heart falls foward and presses more closely inside the left chest and this draws attention to the beats. That's why they ask you to adopt this position for an echo-cardiogram.

Much less commonly patients with devices get inappropriate skeletal muscle activation from the PM's output which is intended for the heart muscle only - and although for IPGENG12 this was a 100% failure, it's really quite uncommon with bipolar leads and accurate placement.  In fact it's sufficiently rare that patients are often not believed at first.

Your PM will also do routine self adjustments, usually daily - varying the voltage of the delivered impulses - to maintain the optimum balance between certainty of 'capture' (==effective and reliable heart pacing) and maximising battery life, and some patients can feel this.

Assuming everything is ok then 'will it get better', 'will I stop noticing'?  Yes, you will.  It will become like breathing - sometimes you notice every breath, then you forget about it and your automatic systems take over.  Ironically, the less you worry about it, the less you will notice it - crazy but true.  Young worry-warts often end up in cardiology clinics having ECGs because of the large number of PVCs they feel.  Once reassured that there's no issue, the anxiety reduces and the PVCs reduce.  I know - I was one!

sure

by dwelch - 2019-10-31 19:37:52

so do you get used to it, yes.  like a belly button or a toe you know you have it but forget it is there until you stub one.  then not long after you forget again.  you will get used to it.

 

we dont understand what you mean by feel it pacing the pacemaker is working on every single heart beat, esp if you are 100% paced like I am.  every single beat the pacemaker is "pacing".  now in my case the pacer fixed my heart block in a way that I used to feel every beat all the time to not feeling them again until something a normal person would feel when I work hard on something, exercise hard, etc.  

Now you are still only a few weeks into this maybe had the first post op appt but not the 6 month or few month one yet.   32 years with pacers, on number five, I findally did have some issues on number five.  first off it is my first biventrical and with that the one side they normally dont use if the signal is strong enough can give you "belly bumps" as the nurse called it and I do get those some times, but not enough to warrant changing the settings, leave the settings if they are good, it doesnt wake me up, I usually have to be standing a certain way breath in a certain amount and be the right kind of tired, etc.  rarely happens.   you are still new to this to not know what your new normal is.  some pacers have a mode where it anticipates more work, step/bounce/move just right it thinks you might be needing more juice to get up some stairs or something and bumps your rate up in anticipation.  lots of folks post about that here.  need to see if you have that setting, I forget the name Tracey_E will know off hand.  depending on your pacer and condition it may simply be a setting change.   it may simply be where your body before would have normally slowed down or had a pause the pacer didnt let that happen and that is strange but the new normal for you.   if it persists, call the doc, you should have another one or two visits here in the relatively near future, but dont be afraid to go in before or inbetween scheduled visits, just call them.  they can if needed put a halter on, a recorder that you usually wear for 24 hours, they can then examine that, if the event happened while it was on or any strange event you note the time and event so they can go right to that area of the recording and look to see what they see.   

Ideally if these kinds of things happen, it is the first few months or year of the first pacer, replacement pacers are set to match your prior pacer and so on, through life.  the technology 32 years ago is not what it is today I had a number of visits that first year to get things tuned to where the doc wanted it.  today it shouldnt take that much work.  and since then I have very few changes over five pacers.

the term pacemaker pacing is what is throwing us off a bit, your pacer is always pacing, every heart beat, you dont feel that its not like it pats you on the back once a day and leaves you alone.  it is working all the time 24/7 pacing your heart.  there are some folks that have conditions where it mostly monitors and only jumps in if the pace gets too high or low, but even there you dont/shouldnt feel that, in fact for those folks they would have felt it if it wasnt there and now they shouldnt feel anything...

 

 

Kicking feeling

by lesolo - 2019-10-31 19:57:23

Ok so I get that you don't understand because I don't quite know how to explain the feeling! I do not feel my heart beat most of the time, which is awesome because I could feel each beat before procedure. However, randomly throughout the day and a lot at night when I'm sleeping on my left side I will have a feeling that reminds me of one thing! It reminds me of when I was pregnant and the baby kicked but on a smaller scale and it's only under my left breast! I know that sounds ridiculous but that is how it feels! It only lasts a few seconds at a time during the day but it is very hard not to react when I am in a conversation. When sleeping, it stops immediately if I move to my back or right side. I go in next week and really don't want to explain that to my doctor! Lol! I was hoping to get a better phrase from someone here who might have experienced this.

I think I know what you mean!

by JLou - 2019-11-01 16:34:45

I had a similar sensation in the first few months of having my pacemaker. It was always in the same place, in my left breast, and felt like something flicking me from inside. It happened every day an hour or two after getting up, and randomly just for a few seconds during the day. It was very disconcerting. My cardiologist and the cardiac physiologists who test the pacemaker didn't know what I was talking about and couldn't help, but when they turned down the voltage at my 5 month check (they have the voltage high to start off with and turn it down after a while) it almost completely disappeared. Now I might get it occasionally but only really faintly. 

If you get any answers following your check up please will you post and let us know? I'm still mystified by my "flicks/kicks" and would love to know what it might be. 

And yes, you will get used to having the pacemaker sitting in your chest. Mine was uncomfortable for the first couple of months but it gradually gets better and better. By 9 months you hardly know it's there (although I know that's hard to imagine early on!) Xx

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