Increase in heart weirdness just after first PM, is this common?

Hi again,

I've posted here a few times now, and first of all, thank you everyone for your replies. I didn't expect to be a member of this club quite so soon but it's been highly valuable getting a glimpse of other people's experience and perspective from relies and older posts.

As posted elsewhere I've had an AV block know since my early 20s, possibly something I've always had. It's not affected me much, no fainting, I've been able to exercise etc, but I've had these occasional "big" heartbeats, likely after the ventricle has skipped one or more beats.

I thought this was something that I'd simply live with and monitor but as a long term ECG now showed quite long episodes, the recommendation was to get a pacemaker to avoid sudden death. It's now done and I am grateful.

What I've noticed though since getting this done 2 days ago is an increase in weird things going on with the heart. Part of this I'm sure is being hyper aware of heart rate etc but not all, I've had extra beats, "big" beats, overall higher heart rate at rest than I'm used to.

I understand that these are not necessarily dangerous in isolation and I trust the PM to keep me going but is this the new normal now? Someone mentioned that the electrical system of the heart can be affected by the procedure itself, should I expect this to restore itself over time or is it a permanent change caused by the presence of the leads?

I appreciate that every case is different etc but would love to hear your experience.


Yes it is common

by Gemita - 2023-07-08 12:19:12

John you are keeping us busy.

An AV Block is indeed an electrical problem within your heart, so even without a pacemaker, your heart was already affected by electrical disturbances.  However following an implant, when leads are attached to the heart muscle for the first time and while we are getting used to being paced, many members find that their electrical disturbances increase. This is quite normal.  My arrhythmias for example did and it took some 3 months before my heart settled and those pauses, heavy, irregular, racing beats calmed down.

It will therefore be so normal for you to feel these vibratory, twitching, pausing, thumping, racing heart beats at first.  In fact it would be rather unusual if you didn’t.  Most of us need to allow our hearts to heal following a pacemaker implant, some say up to 3-6 months.  Add on top of this, the psychological trauma of needing a pacemaker and the healing period could well take longer.

Yes, if you have no other problem except AV Block, I would expect your heart to restore itself over time and settle down to being paced, particularly if any cause (illness) for your AV Block has been found and treated too.  However electrical disturbances of the heart are by their very nature sometimes difficult to manage or to predict, so all you can do is to keep stress levels down and to stay as healthy as you can to give yourself the best possible chance of a successful outcome.  

Pacing can adversely affect our hearts longer term so it is important that we continue to ask questions or to report any difficult symptoms to make sure that our settings are right for us.  For example a high percentage of right ventricular pacing may lead to heart failure symptoms in a minority of susceptible patients, but that is not to say that it will happen to everyone who is paced in their right ventricle.  I would strongly advise you not to look for problems if you are feeling relatively well compared to pre pacemaker days, since this would be a good indication that all is well John.  However I would strongly advise you to learn as much as you can about your heart condition and your pacemaker which you seem to be doing and take action quickly should your condition ever require it.

Higher Heart Rate

by Penguin - 2023-07-08 12:36:13

Oh John, what an interesting run of posts you've put up. 

re: Higher heart rate - Didn't you say that your v.pacing is set to kick in at 40 bpm?  Sounds strange to me that your heart rate is higher than before in spite of this programming.  I cannot explain that. 

re: Big beats - You say that you suspect that these big beats come from the ventricles and state that you already know that they are not dangerous in isolation. I'm curious - how do you know that this is the case, if these 'big beats' haven't already been explained to you?  What do you think they are? 

Re: Effects of the procedure.  If you use the search icon at the top of this page you will find posts with examples of post operative effects.  However, many people recover very well and other than wound site issues and minor niggles have no ill effects at all and resume a normal, if not improved, lifestyle very quickly indeed. 

I'd ask your cardiologist about the high resting h/rate and 'big beats'.  It may be down to programming. 

I wish you well John. 

"Big" beats normal?

by AgentX86 - 2023-07-08 12:51:57

These are likely PVCs but  may be PACs.  They're rarely dangerous but worth getting checked out.

Unfortunately, I'm getting them almost all the time, now. It's often really bad. Sometimes one every other (bigeminy - two pairs - bi = two, Gemini = pair, as in the constellation) when walking. I do a lot of walking.  All PVCs feel like crap. Weirdly, the more often, the less I feel them.

 I have my normal four-month appointment with my cardiologist at the end of the month.  I captured one of the bigiminy episodes on my Kardia Mobile 6L so will show it to him then to see what he thinks. It may be NSVT. My pacemake picked up one episode last in-person PM clinic appointment. My PM hasn't called home, so I'm not all that worried.

Your heart has just been assaulted and it's pissed off.  Until it gets used to being paced, there can be all sorts of rebellion.  This will pass in short time as it settles into its new normal.

You will be hyper-aware of everything and you will likely blame the weather on your new body part.  It's normal.  In fact, PVCs are normal.  Pretty much everyone gets them occasionally but don't notice them or think "what was that?" and then it doesn't happen again and go on with their business.  After anything as serious as a heart problem, one is naturally hyper-vigilant. You will notice things that you didn't before (may even invent things to worry about).  This will pass and you'll forget that you even have a pacemaker.  It'll be like your little toe. You forget it until you bang it into the bed post.

Weirdness interpreted

by Gotrhythm - 2023-07-08 14:04:12

You need a translation of what your heart's weirdness is really saying.

Your heart: What the heck is going on? [THUMP] You want me to beat, regularly, ALL the time? I didn't ask for this.

You: Hey, it wasn't my idea. I could have lived with what you were doing. Heck, I had lived with it for years. But it scared the doctors. You being, you know, so irregular and all.

Your heart: [THUMP] You don't like irregular? I'LL show you irregular [THUMPity, Thumpity, THUMP, thump, BAH-DAH, thump-thump]

Seriously, your heart was doing things one way, and now it's having to adjust to a new way. The way the pacemaker signal travels through the heart works, but it is different from the way your heart has always done it. It may take a while for your heart to grow accustomed, but things should smooth out.

From your description, I suspect what you are feeling is called PVC. PreVentricular Contraction and yes it is coming from the ventricle. There's a great Youtube video, PVCs in Plain English, Dr Joshua Cooper, that will dispell the mystery around what you feel when they happen.

You might be having other irregularities as well, but PVCs are very common. They happen even in "normal" hearts. And to have an increase in them and other odd beats for a few days or weeks is fairly common among pacemaker recipients.

Discharge info was not very clear

by John_Locke - 2023-07-08 14:36:39

So the EP that I had originally spoken to could not perform the procedure himself due to an injury. The doctor who did was highly qualified and experienced but not very forthcoming with details on programming when I asked.

He did say it was set to "keeping me alive" and a base rate of 40 as my heart is doing the right thing for the most part and that I could discuss the details with my EP in the check in after 6 weeks. 

From what I experience now however he must have meant that it would only take over from the sinus rhythm if it fell below 40, but it must be set to "fill in the blanks" and pace the ventricle when my AV block kicks in. This only happens occasionally, but I've felt it pace at a rate higher than 40 for sure.

Regarding resting heart rate, I'm not being paced at a fixed higher rate, I've just noticed that my HR doesn't fall as low during the night, though this could just as well be just stress/anxiety and not getting enough sleep.

The big beats have been explained previously as the heart filling up with more blood after skipped beats in the ventricle, though that shouldn't happen now so I'm no longer sure.

Lots of questions!

Big beats

by AgentX86 - 2023-07-08 18:16:46

I don't think the explanation of the heart filling with more blood after the PVC so the stroke is larger, is right.  The, ventricle, before the shortened PVC signal is full (was filled the beat before) so gives a full stroke.  The PVC then shortens that cycle before the heart can refill.  The ventricles, the beat after the PVC impulse doesn't beat hard because it hasn't had tme to fill. I don't think there is a "big beat" in there but the cycle before the skipped beat may feel like it somehow. I just feel the empty, shortened. or "missing" beat.

Hyper awareness

by Lavender - 2023-07-09 01:16:17

Hi !  I think we all were hyper aware of our bodies after pacemaker implant. I'm still very aware of my heart beat. Used to not notice it. I'm two years in and it doesn't cause me any anxiety anymore. My heartbeat prior to getting the CRT-P was on the slow side so having it set at 60-130 makes me feel energetic. 

In time it all becomes our new normal and we don't feel like calling the doctor as often. We know our device is doing what it is supposed to and we start to trust our bodies once more. 

You sound normal to me if I think of all the worries and questions I had at the start!

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

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