Pacemaker advice

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.

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.

@phil75
I have had a lot of experience with ICD/Pacemakers from a patient standpoint. I am on my 3rd one and have had one almost 20 years now.

When I started Entresto and Carvididol my pulse rate went down into 30s. My EP raised my pacemaker rate slowly and slowly to see where the pacing corrected my irregular heart beats and PVCs improved. I now have it set at 70 bpm.

From my standpoint of a patient a very low pulse rate unless a athlete with powerful heart is not pumping enough blood to prevent dizzeness and fatigue. I have no idea if there are drugs to raise pulse rate most of time is to lower them.

But a pacemaker can be set at any rate to bring your heart rate up to where you don't have the dizzenes if that is the cause of your dizzeness. I want to pass on to you from a patient standpoint that geeting an ICD/Pacemaker these days is an outpatient procedure and usually go home the same day.

You will have some restrictions to make sure the leads seed properly but could provide a drastic life change if it is deemed one would remove your symptoms. I just trying to pass on that millions get ICD/Pacemakers these days and if can improve your life or help save it I would strongly consider it.

How is your BP? A low BP also can cause dizzeness and fatique.

I did a sleep study at Mayo but my study came back not a recommendation for C-Cap (spell?). I hope they find the cause and you get the appropriate treatment.

That’s a heck of story. I was giving the doc the benefit of the doubt because of Covid and until you said he was an assembly line doctor. I left this new doctor I’m seeing a message on the portal on Friday night after meeting him last week. Mentioned that I had a few questions about the PM and would like to discuss them with him and if he prefer a phone consult, to have the office call me. He called me last night. Questions answered. I’m glad you got a second opinion and i hope it works out for you.

Thanks for your thoughts. I had a conversation with the doctor last night and we postponed the discussion about the PM until I go through a sleep study. This forum has been a big assist for me to make good decisions. Thanks again.

Sounds like a good idea if you're uncertain about needing a pacemaker at this point.
Just for your perusal, here is a link to an article that lists and discusses the criteria for pacemaker or ICD placement. Reading this article might help in that discussion you will eventually have with your doctor. I think these criteria were updated in 2019, the article is from 2023:
https://www.ncbi.nlm.nih.gov/books/NBK507823/
I've had a pacemaker for going on 6 years now- implanted for sinus node dysfunction in June 2019, and it was a game changer for me. I guess I went for about 2.5 years of being tired, with an low heart rate ( in the high30's, low 40's), intermittently at first but worse as time went on. It got to where the heart rate wouldn't go past the low 50's, even when I was active. This could have been due to the high dose of metoprolol I was taking to control the atrial tachycardia( with heart rates into the 170's) that dominated my life without the medication, though it seemed the bradycardia occurred at times that wouldn't be expected if it were just due to the medication. When I was referred to an EP, he discussed my options as including a possible ablation, though he was reluctant to ablate an atrial tachycardia, which he said was difficult to induce in an electophysiology lab. We tried my weaning off the metoprolol, and taking diltiazem ER to see if that would control the tachycardia and not cause bradycardia, if not he recommended a pacemaker. The diltiazem failed miserably , so I got the pacemaker. The EP had explained to me the progressive nature of sick sinus syndrome, so when I dragged my feet a bit about getting the pacemaker, the EP ( sarcastically, I think) informed me it wasn't a stat procedure, so if I wanted to we could wait "till I begged him to do it". That I understood.
I think the settings put in place by the EP at my first pre-op visit were optimal for me, when he set the rate response ( this allows the pacemaker to increase the heart rate to match the patient's activity) it made a huge difference. I no longer have those exhausted all the time, mind-nothingness that made me fear I was getting into dementia, as my heart rate is pretty much where it needs to be for my activities.
The pacemaker monitor also monitors and reports the heart's and the pacemaker's activities, so my cardiologist knows what is going on. I've also developed Afib over the last few years, though it's still paroxysmal and well controlled ( pretty much) with the metoprolol. As they said, this thing is progressive and apparently over the last couple years I have developed some heart block as well, so with pacemaker adjustments I'm paced close to 100% in the ventricle, as well as the 80-90% it had been in the atrium. So I guess at this point it's a lifesaver for this old gal (77) who didn't think a pacemaker was necessary. And at this point I feel good and can spend days on end not even being aware of my pacemaker or even thinking about it.

Just one more thing to mention as I'm not sure how well this is discussed in the article. One of the 2019 Class I criteria for pacemaker placement is symptomatic bradycardia caused by a medication for which there is no substitute. This would include rate or rhythm control drugs for individuals suffering from tachycardia but in which ablation is not an option. The pacemaker would keep the heart rate from going too low when the person takes that medication. I think that was one of the criteria under which I received my pacemaker, though I've had 3 cardiologists ( 2 EPs) all tell me that my sinus node issues were underlying, there anyway and just brought to light with the medication.

Anyway, good luck with all this!