Misdiagnosis & impact having an unnecessary pacemaker.

I'm very sorry to see that this could have been solved with a bit more investigation and maybe time. Did they nuke your AV node? If not, and I'm nothing like a doctor or a nurse, so this may be a silly question, but could they remove the PM and let your heart, maybe with some necessary rehab, continue where it left off?

My reading tells me that, even with well-conditioned and fit hearts, you should keep a lid on your Max HR when exercising. This is commensurate with age. As age rises, our Max HR should fall, year-for-beat, from a theoretical top figure of 220. In your case, it is presumed to be 131 BPM, which I would think is probably pessimistically low...for you. I'm not widely read about this, and really your own performance, perceived effort, and any sensed ill effects would/should be a great guide.

Have yet to discuss removal or switch off options with specialist.
Those age related pulse rates are averages and I would have thought the devices would cater for exceptions.

@gloaming Thank you for posting some good ideas for questions that @latuma could ask her EP and cardiologist. I agree that there should have been more investigation pertaining to glaucoma meds causing a temporary drop in heart rate. Knowing the possible side effects of the glaucoma drops would have been helpful, surely others have noted that during studies. One of the problems is that there is such a vast and increasing fact base that medical personnel may have trouble keeping up with (a reason for specialization, why would a cardiologist know the latest on glaucoma drops)? Another issue we have in dealing with medical personnel is that they do not talk to each other or even read charts (I have My Chart) to get the full patient picture. I had a friend that was a NP (nurse practitioner) who encouraged people with multiple issues to have a case manager coordinating their many details. @latuma I am impressed that you are jogging at 79!

@walkinggirl Linda, I am no longer the runner that I was. I had to stop when I developed atrial fibrillation. It is the OP who is still running. 🙂

My questions were designed to help him to situate his next visit with a cardiologist who would be keenly interested in the conflicts between glaucoma treatment and the outfall, changing blood pressure, and his own work for his patient's cardiac circumstances. Patients soon learn, as you would know only too well, probably, that they often have to tend those fields themselves. Just today I had to call my ophthalmologist's office who did my vitrectomy 11 days ago and ask that they forward a requisition for the 'two-week checkup' to my local ophthalmologist who normally sees me. The local hadn't received it when I called to set up that appointment. It's not the same thing as not being up to date with meds, but it is a typical example of how actively involved and vigilant, and informed, a patient must be these days.

@latuma
What tests did they order before deciding you needed a PM?
I had a PM implanted last year . My initial complaint was a low pulse which was unusual for me.
I went through a lot of testing before they concluded I needed a PM. My final diagnosis was
second degree 2:1 atrioventricular block.

@gloaming Yes! You, me and everyone else needs to be a very squeaky wheel advocate for themselves. After I had a phone appointment leading up to a septal myectomy, I was told by Dr E that I would SOON receive a phone call to set the surgery date. What does soon mean in Minnesota? I know a NY minute. A week went by. I called. No action. Another week goes by, I wrote on the patient portal about the absence of that phone call. Next day, the scheduling department called and the rest is history. If the patient cannot be involved and vigilant, they need to have an advocate with those traits. Even if you are no longer the runner you used to be, it's OK to be the runner or walker you can be now.

I was wondering how it was determined that you needed a pacemaker seemingly due to side effects of the Symbrinza you were taking? I could see where this drug might cause low blood pressure- the medication in eyedrops can get into the circulation, and it IS intended to lower the intraocular pressure. But associating it with your low heart rate, which from your post seems as though this predated your Symbriza? I looked up the drug, and don't see a low heart rate listed anywhere among the side effects, though low blood pressure is listed.
https://www.drugs.com/sfx/simbrinza-side-effects.html
Pacemakers are not intended to raise low blood pressures, just to raise low heart rates. Though a low pressure can be associated with slow heart rates sometimes, it sounds as though your resting heart rate was a separate issue altogether from your Symbriza. The pacemaker will keep your heart rate at a level where it is set ( generally 60 or above, with activity. But if your bradycardia is physiological ( like an athlete's would be) and your heart rate increases appropriately with your activity, and there are no symptoms attributable to your bradycardia, it may well be that you really didn't need that pacemaker. That would be a serious discussion to have with your cardiologist. They can at least explain their rationale for implanting a pacemaker, and discuss options for keeping it or removing it.

As far as medications and specialists, every provider I have ever seen ( including the dentist) has asked for list of medications ( including over the counter meds) I take. This information is part of your medical history, for consideration of possible side effects related to a provider's specialty, possible interactions with medications they may prescribe. I'd admit it's likely many of these providers don't take more than a passing glance at your medication list, but they should consider those medications when they are treating you.

My PM was fitted in December 2024. I was diagnozed with glaucoma (initially in one eye only) nearly 30 years ago without any apparent side effects from the medication prescribed until recent times. As the glaucoma advanced the drops prescribed changed time along with lazer treatment etc. I am not sure when I was first prescribed Simbrinza but it was for some time (at least 12 months probably longer) before I had the PM fitted. My routine was to apply the eye drops before breakfast and a hour or so later I would become drowsy for about an hour or hour and a half. Mostly I would battle through it but occasionally surrender and take a twenty minute knap. If I had to drive somewhere in this time period I would really have to concentrate to stay awake and alert and sometimes I would ask my wife to drive while I knapped.
I mentioned this to my doctor during a routine visit and he said if your lower blood pressure reading goes below 40 come and see me.
The very next morning it was 78/38 so I walked to the surgery and was told to get myself to the hospital immediately. So I drove myself there and was immediately admitted. However, by the time I arrived and was admitted my blood pressure would have recovered but my pulse was at its normal rested level in the low 40s. So it was almost immediately assumed that that was the problem.
So I was kept in hospital for 5 days while they organised a PM fitting. When I got to the operating table and was about to be anethesised the surgion said I am about to fit this but there is no guarantee it will fix your problem! I was rather surprised that this was the first time anyone had mentioned this but I thought we had gone so far it was a bit late to turn back.
The PM was fitted and the next morning I was sent home and soon had another bout of low blood pressure and was readmitted but again by the time I got to hospital and was admitted the blood pressure had recovered and all other checks of the PM etc proved normal so I was sent home again.
The bouts of low blood pressure continued. However, two months later I went on holiday for a week and on the way the Simbrinza eye drops leaked out and I was without them for four days and noticed I was no longer getting drowsy in the morning. When I got a new script and applied them the symptoms immediately reappeared. So I stopped applying the drops in the morning and only took them last thing at night. Problem solved.
Yes the hospital was supplied with my short medication list for the drops for glaucoma.
I have always been active. Thirty years in the army and have exercised regulary ever since.
I got back to jogging about a month after the PM was fitted but my shoulders and neck would lock up slowing my down considerably. Fortunately, that resolved itself about two months ago and I average between 31-32 minutes over 5km now. Slow but not too bad for my age.
I have another appointment with the specialist in a couple of months but as I am 80 this year so I suspect that to avoid further possible complications I will be advised to leave things as they are.
Nevertheless, I hope some institutional lessons are drawn from this experience.
Thanks for your interest. Bob

@latuma Wow, sounds ( at least in my humble opinion, not a doctor here) as though they did jump the gun in assuming it was a low heart rate causing your symptoms and putting in that pacemaker. Generally the criteria for pacemakers include correlating the symptoms directly with the bradycardia, documenting the cause and effect, but it's not always easy when there are multiple medical issues in play.

I'd also imagine that they may advise leaving the pacemaker where it is, maybe turning it off. Even if they did remove the pacemaker battery, it's still likely they'd want to leave the leads where they are- if you had the pacemaker implanted in December 2024- over a year ago- those leads are well embedded in the endothelial lining of the blood vessels they're in.