Feel "pacing"

Hey guys - I'm 25 yrs old and I just got my pacemaker implanted on 4/13 - I was diagnosed with inappropriate sinus tachycardia (resting HR 110+ and would shoot up to 190+ with little exertion) and they tried 14 different meds, and 2 ablations before implanting the pacemaker (over a period of 1 yr). During the last ablations (4/12/10), I basically told my doc to do all that he needed to do to drop my heart rate b/c the 1st ablation process only dropped my heart rate 10bpm and it didn't help. So, my doc was doing the ablations and got my heart rate to drop, but apparently overnight, I went into a junctional rhythm, so my doc said pacemaker was next step. I can honestly say that I am feeling much better since having the pacemaker implanted, but I am having some issues of feeling the pacing. They set my pacemaker to not go under 70 or over 150bpm and have turned the energy down once already. I do not feel the pacing all the time, just every now and again. Is this normal to feel it a couple times a day, or should I go back to have the energy turned down again? BTW - i'm pacing at 94%, so my new best friend (PM) is doing most of my hearts work! :)

11 Comments

Feeling the pacer or feeling the normal rhythm?

by golden_snitch - 2010-04-22 01:04:25

Hey there,

could be my story, just that my average heart rate was 120-140 at rest (even at night), and I needed three ablations to bring the rate down; during the third the EP destroyed the whole sinus node. I had junctional rhythm afterwards, too, but that rhythm alone isn't an indication for a pacer. The indication is when you start having bradycardia of less than 40bpm and/or pauses of more than 4.5 seconds which I got after a couple of weeks.

The question is: Is this really the pacer your are feeling? I mean when you are paced 94% in the atriums but only feel the beats every now and then, it might be that what you are feeling is not the pacer but the 6% own rhythm you still have. I feel every little change in my rhythm. I'm paced 99% in the atriums but still whenever my AV-node takes over with a retrograde conduction or my sinus node (keeps growing back) throws in a few beats, I feel those. So, my guess is that you feel the difference between pacer rhythm and normal rhythm.

Best wishes
Inga

Thanks!

by mego13 - 2010-04-22 01:04:32

I just got the energy turned down Tuesday, that is why I was kind of waiting to see what others thought. I will call to go back today! Thanks again!

normal rhythm i guess

by mego13 - 2010-04-22 01:04:39

Inga, I guess I am feeling the normal rhythm now b/c I do not feel it like I was. Yes, my heart rate dropped and the temporary pacemaker he put in my groin after the ablations kicked in overnight - and that is why I had to get the pacemaker, but I am still new to all the lingo...lol! Anyway - thanks for your comment, I am still going to go to the doc to check it out! Glad I'm not the only one in this boat! :)

Meg

feeling the PM

by cfritza - 2010-04-22 03:04:20

Hi Mega13,
Yes some people can feel their PM doing things sometimes, When I first got mine in I would get these feelings (like when they put the magnet on and actually pace you) they happened several times a day and I wasn't to thrilled to have them. I am very thin especially up top and the pacemaker nuse said it could be the PM checking or pacing and she adjsuted it and I hardly ever feel them anymore. So check when you go in again if they can adjust your settings. Good luck

BillMFl

by BillMFl - 2010-04-22 06:04:29

Jusy my guess, but you may not be feeling the pacemaker. You may be feeling a pvc or some other mild rhythm disturbance. Also, your pm may occasionally be pacing your ventrical which can cause a sensation felt by some people. All pm's do a system check at a set time. Mine does at 12:25 AM, and if I am awake, I can feel it test the leads just like when the tech checks them. If the voltage has already been lowered, I would tend to suspect something else. Some people (like me) feel queasy in the chest and have the urge to cough when the tech accesses the pm and test continuity, etc. When you have your next pacer check, they will see if your history shows any odd rhythms, but if its frequent, very uncomfortable or last more than a short time, see your doc right away. They can put you on a Holter Moniter and see exactly whats happening and when..

I Say Go BAck

by SMITTY - 2010-04-22 12:04:19

I'm no expert by any stretch of the imagination but to me it sounds like you need to go back. We should never feel an impulse from the man made pacemaker to make our heart beat anymore than we feel the heart's natural pacemaker sending an impulse. Higher than necessary power settings can do what you describe. They will also lower the expected battery life. Lower power settings will not decrease the percentage of time your PM is helping out. That PM is an on demand device and sends an impulse only when it detects your heart's natural PM has failed to send one.

I notice you got your PM just over a week ago. It is not uncommon for it to take a few attempts to get the optimum settings for a patient. Another thing to keep in mind is that unless you tell the Dr that you think something is wrong he will have no reason to think the settings on your PM are not perfect.

Good luck,

Smitty

Normal for your age

by tcrabtree85 - 2010-04-23 04:04:09

I haven't read what everyone elses has said but I am 24 and have had a pacer for 3 years. I have gone through 3 different pacemakers. I think what you are feeling is very normal only b/c of what I continue to hear from 3 different EP's is that the younger you are the more you are feeling.
I question if you are feeling the pacing or your own heart kicking in. I feel a change when my own heart is doing work which is what you were talking about with the junctional ryhthm.
If it really bothers you a lot I would consider going back in and getting the settings adjusted more. Hope to get to know you more.

Tammy

pacemaker energy

by mego13 - 2010-04-23 05:04:29

thanks guys - i went to the doc office yesterday and got the pacemaker energy turned down again and have not felt much since then. i was pacing 96% this check - the pacemaker tech person turned my pacemaker on standby for a while and i definately went into complete heart block - don't know any more about it b/c i didnt get to talk to the doc, but anyone know about this? i go back to the doc next tues (scheduled appointment) to remove staples and do another check-up, but i'd rather not wait until then to hear about the "heart block". thanks in advance!

Inappropriate Sinus Tachycardia

by ChicagoKim - 2010-04-23 05:04:53

Wow... Mego13 and Snitch... sounds like my story.

High resting heart rate, would go over 200 just going up stairs.

First ablation they took over 50% of the node just to get my HR to budge. It "regenerated" 6 days later and I was back to square one. Lots of junctional rhythm. As Snitch said, it is not a reason to get a PM really. Some people don't do well with junctional rhythm though. I am one of them. If feels like impending doom to me. I cannot tolerate it.

Second ablation they took out the whole node and put in the PM. I was 100% PM dependent.

Two weeks later my resilient heart started beating on its own again. Too fast, of course. My resting HR is high again and my HR increases like crazy with any exertion or stress. I can blink my eyes fast and make my HR go up 10-20 BPM... So far my sinus node is not capable of getting my HR past 170, so we are waiting and watching to see where it will end up. My sinus node beats erratically and stops altogether. I'm pacing 13% currently.

So we will see if they need to go back in again.

I have never really felt the pacing.

to inga

by mego13 - 2010-04-27 01:04:49

Inga, the pacemaker tech told me that I went into complete heart block. So I don't know how all that works or if my doc also did AV Node ablations while in there, etc, I guess I will just have to check and see when I go in for my appointment.

Meg

Heart block

by golden_snitch - 2010-04-27 12:04:55

Hey,

how do you know you went into complete heart block? I mean, with your history this is not very likely because you have never had any issues with your AV-node and didn't have any ablations in that area; you "only" had the sinus tachycardia problem. Are you on any meds that would slow the AV-node down or even lead to such a block?

What usually happens when my cardio checks my underlying rhythm is that all of a sudden my rate drops from ~80bpm (pacer) to something around 40bpm (underlying rhythm), and that does feel like a heart block but it isn't a real block.

Best wishes
Inga

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