Feeling Pacing?

Thank you for participating in this forum. I have had a pacemaker for a few years. I had severe bradycardia, (22 beats/min), and I was lucky that we figured it out, as I was really fizzling out...sleeping all the time, no memory, etc. I am retired, and  60. I also have chronic arthritis which is a real pain. I have a Biotronik pacemaker, dual lead, MRI compatible.

I wonder if others feel the pacing especially when you lie down at night? I was told that I would feel ventricular pacing more intensely, and lately, I have noticed a LOT at night when I lay down. It feels like a fish flopping around in my chest. Does anyone else feel this way? Thanks. Kathleen, VTPacer


6 Comments

Fish

by AgentX86 - 2018-08-14 22:48:30

I haven't felt that since I've had my pacemaker but when I was in Afib/flutter, I'd get that all the time.  I thought it felt like my heart was doing somersaults in my chest.  Last summer it was so bad that I couldn't sleep and it got so bad that I didn't think I could work any longer.  Two (failed) ablations later, and an AV node ablation and PM and it's gone.  The AV ablation means that I'm 100% paced in my ventricles (no pacing, or even sensing in the atrium) 

I know it doesn't help you but I rarely feel my heart beating anymore.  What you're feeling is not normal and should get the attention of your EP.  It's a big QOL issue.  BTDT.

Feeling Pacing?

by VtPacer - 2018-08-14 23:01:08

I thought that it was fairly normal to feel the ventricular pacing as this type of flopping feeling, like a fish is doing a sommersault in my chest. Hmm. I'm sorry you had to have two ablations. What is PM?  I can feel all this, and I am way down at 50, because I could not sleep with it at 60. 

I don't want to complain for nothing, but it is weird.  Maybe I should call. Thanks. Kathleen

Feeling

by AgentX86 - 2018-08-15 00:02:58

I was never told to expect it and haven't.  I couldn't be more happy with my pacemaker.  It's been great - I can sleep!

I had three ablations - 11/16, 8/17, 1/18, and the AV ablation and PM 2/18.

PM == pacemaker

They first set mine at 80bpm, for a month. Didn't like that much but they were afraid of sudden-death, which my EP said was a risk with a new pacemaker.  He said he'd turn it down to 60bpm after a month.  It's complicated but another EP runs the pacemaker clinic and she, reluctanlty turned it down to 70bpm, which is fine.  I'd like to try it at 60bpm at night and 70 during the day but I'm not sure they can do it.  We'll see.

Fish

by tammyjk1021 - 2018-08-21 22:14:21

Sometimes and it can go on for days.  At night when things are quiet and such I really think we tune into our hearts a bit more.  I get PVC's often if I'm stressed and it will drive me crazy.  My doctors all agreed on Xanax for me when it gets bad because I begin to worry and it has a snowball effect.  I feel the pvc's the pacing and everything in between.  Once I got checked out we decided on meds when things get bad.  I needed a PM for Bradycardia then after my Pm I went to Tacycardia as well.  I was put on Metropolol and that also helps a great deal.  Now I make sure to get tons of water, get really tired when things get bad and if all else fails....xanax lol.  

Floppy Fish

by Chapter - 2018-08-24 12:51:14

Hi Kathleen

2 days after getting my Pacer for Bradycardia (9 months ago) I felt like I had something inside me (like a baby) kicking to get out.  It was quite strong and could take my breath away.  I told every doctor I came across about it and they all kind of shrugged their shoulders and said I would probably get use to it.   I admit that today it is not as strong or maybe I am use to it, but it does feel like a big fish flopping around under left side ribs.  It is positional as I feel it more if I lean on something to my left or lay on my left side. With my investigations on web I decided that my lower lead must be too close to diaphragm.  Cardiologists finally said OK come back (5 hours away) to Placer Clinic and will see if we can find anything. I was there just this past Monday, they did all the Pacer games trying to reproduce sensation but no luck.  Had 3 different ECG’s with different levels of pacing and no pacing then had an ultrasound.  The Cardiologist was very nice and showed a lot of interest - was his first day in Clinic.  He called me at home the next day - left a message as I was not home from trip yet - to say that my leads were good and had not moved so it was probably not a diaphragm issue.  He did want to talk to me about some other tests that he wants to have done and would get back to me to discuss.  Like others, after 9 months of carrying my baby/fish, I am use to it and do find some comfort in the beat at night.  I feel the hesitations, the PVC’s, and the completely missed beats, but it is still beating so all good, I can sleep.  It is very helpful to read here that I am not imagining anything that this happens to other people too.  The new Cardiologist seems very interested in following this up so I hope it is all good and not something else he sees.  Thank you all for being here, 🌹

three lead

by dwelch - 2018-08-28 02:43:20

I am on pacer number five but this is my first three lead (bi ventrical).  Once side is normally easier/better/whatever and that is where dual leads go, but when you go for biventrical you can get "belly bumps" as my docs tech calls it.  I do get them from time to time not sitting down have to be standing just right and when I breath in.  the lead is then close enough to the muscle that it fires it too, very much a belly bump can see it as well as feel it.  It doesnt bother me is more fun that not as it is fairly rare and I can usually get it to stop right away if I reposition, if it happened at night in bed that would be another story.  Sounds like you have the same situation with your lead and a different set of muscles.  it is certainly a weird feeling, they can only adjust the pacer so much before it stops doing its job, so I would expect some tuning over some number of visits to try to find a sweet spot where the pacer is working right all the time but it isnt crossing over to the wrong muscles too much.

 

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