Pacemaker advice

We'd need to understand more about what has led up to this choice. Why a pacemaker? Why not at least one other viable alternative?

I guess an ablation is alternative. We discussed both. I lack energy and fatigue a lot. Have had two cardio versions in in the past eight years, the last being in November of 24. Two ablations, one for flutter that was required for a different surgery and second six or so years ago that lasted a couple years. So here I am trying to figure it all out because these are the options I’ve been given. I am in and out of afib, but I realize that a PM doesn’t help that one way or another.

Yes, that is my understanding as well. A PM only improves a slow heartbeat, and an implanted ICD can help with some arrhythmias, but it has to shock you, which I hear/read is a most startling and unsettling experience. I have had four cardioversions. No. 1 didn't work, and I got the third shock just as I was emerging from the propofol depths, which was NOT a pleasant experience!! No. 2, about 15 months later, lasted 16 hours, No. 3 was the next day, lasted 4 hours, and the fourth, the day after that, lasted 20 minutes. They sent me home with more metoprolol and said good luck. It converted about two hours later.
You may be aware already, by the sound of it, that you are in pretty good shape in terms of the evolution of this disorder; you're still quite apparently paroxysmal, which is THE place to be when deciding what to do next. In my experience, and in the right experienced EP's hands, an ablation is going to be the 'gold standard', as the medical community seems to feel these last few months.
I'm far from being expert on the topic, and I'm a lot newer than many to the subject and the experiences of tachyarrhythmias. Would you consider going over to affibers.org forum and registering and asking some pertinent questions there? One denizen, susand, has a storied life behind her (you wouldn't believe it), starting when she was a little girl (lived for year or more in a hospital to get her over a heart defect), and she has gone through the tide of arrythmias, over 50 cardioversions (!!!), several ablations, and is now on a PM as of about 2023. She's still not doing so great, but you might get some important help from her....if you are interested. The is easily the most resolute and toughest person I know this side of The Veil.

@phil75
The amount of information you provided is very hard to pass on our experiences with this subject.

Why are you considering a pacemaker? What have you been told that you sense you need one?

I am on my 3rd ICD/Pacemaker and have had one since 2006. When my EF got to 30 I was advised to consider a ICD/Pacemaker. I went to Mayo Jacksonville for a second opinion who echoed the advice. I was given both the ICD and pacemaker as had a lot of PVCs and two of my mediation caused my pulse rate to be very low (in 30s). So my pacemaker pulses me at 70 bpm. It also helps reduct PVCs.

The ICD is there to restart the heart muscle if goes into tachacardyia. My ICD will try to pulse me out first and if that does not work it shocks me. Over the amost past 20 years I have been shocked about 10 times.

I was told and it is what I focus on is an ICD/Pacemaker is like having your own EMS in your chest. It will monior and react with seconds if needed. It can take many minutes for EMS to reach you, diagnose and then deliver a shock if needed. The ability of a ICD to bring heart back to rympthm is about 100%. But that is arrymthmias not heart attacks.

Yes the shock can be nerve racking but just shows you the device is working. I would not be typing this message to you now if I did not have a ICD/Pacemaker.

This is helpful and I will look into afibbers.org. Thanks for the suggestion. Also, I think I need to know more about another ablation. I believe I was the one that discouraged that discussion for a a couple of reasons but I need to keep an open mind about it. You’ve been helpful in this regard. Thanks.

Thank you for you for your comments. I’m being told, the best way I can describe it, that I have intermittent slow beats that is causing my dizziness and fatigue. I’m tired almost from the moment I get up. I think based on some of the suggestions I’ve received and read about, a sleep study is something that I need to research and discuss with my doctor. Thanks again.

I have some info about the four years I’ve had my pacemaker, but I’ll wait until this discussion about whether you even need one works itself out.

What I have to report falls under the category of pacemaker advice but maybe not this particular line of reasoning so I don’t know where to post my experience.

Go for it!

Four years ago I had a Boston Scientific pacemaker implanted. When two months later I told the person monitoring it from her office that I still suffered from some of the symptoms I had before the pm went in she insisted that everything checked out fine. I asked to talk to the doctor, stating I was very concerned about why I was still having shortness of breath and an inability to walk very far without feeling a tightness in the chest, symptoms that had accompanied my low pulse rate before the pm.

She said she would go ask the doctor. When she came back she said that he said it was ok to tweak something. I don't know whether she ever did anything. I even doubt that she even talked to the doctor. The symptoms persisted. So I went for a series of heart and lung checks, trying to find out why I was still not feeling right. During that period I was diagnosed with mild asthma and treated for it, but the pulmonologist said he doesn't think the SOB and chest tightening is a lung issue. I also had a number of heart checkups--stress test, nuclear stress test, echocardiogram, angiogram, etc. Everything comes back normal.

Fact is I was never able to speak with the electrophysiologist who implanted the pm. Seems that he runs an assembly line and never has a follow-up appointment to talk with the patient. This was all done during COVID times so maybe that was a factor. I'll never know.

Finally a NP who was monitoring my blood pressure got me an appointment with a different electrophysiologist. Lo and behold...... He tells me that when they put in the pm they set it for one of four settings. I don't remember all the names he gave them. But the first setting they call "sedentary," the second I don't remember the name of, the third they call "athletic," and the fourth "Olympic level" or something like that.

I had been placed on the number two setting. I had also been set to have my heart rate set at 60; i.e., my bpm would never fall below 60, which it hasn't.

According to this new ep doctor, these settings can be changed and he is now in the process of working with me to change them to see if we can get me to function better.

So that's my story.