To get a pacemaker or not, that is the question - bradycardia

Pacemaker?

by AgentX86 - 2020-06-19 23:57:31

Welcome to the club.  I'm sure you don't want to be here, no one does but here we are.

A pacemaker may solve the PAC/PVC problem by out-pacing them.  It worked for my PVCs but my PM is set to 70bpm (during the day) to outpace them.

Non-conducted PACs causing Bradycardia is a new on on me but it's possible, I suppose...

It’s an overwhelming yes from me !!

by Gemita - 2020-06-20 06:44:57

Hello Ann,

My diagnosis before pacemaker implant was

1. Tachy/Brady Syndrome   (I experienced predominantly bradycardia but with intermittent, exceedingly fast episodes of tachycardia), causing syncope

2. Predominantly Bradycardia induced arrhythmias, as seen on implant monitor including Atrial fibrillation, Flutter, Tachycardia/SVT, PACs, PVCs and Non sustained VT. 

My symptoms before pacemaker implant were so debilitating and included

Syncope, dizziness, breathlessness, chest pain, overwhelming fatigue, weakness, freezing body temperature, instability.  

I developed long pauses in between heart beats and a very slow heart rate often falling to below 30 bpm before quickly recovering, followed by surging heart rates to well over 200 bpm since I have AF with a rapid ventricular response  rate which can be dangerous if not controlled.  Atrial rates were recorded as reaching well over 300 bpm I believe. No wonder I felt so unstable.

Prior to pacemaker implant my electrophysiologist said that I had three options to treat my arrhythmias which were felt to be causing my symptoms:

1. A pulmonary vein isolation ablation, which had up to an 85% success rate for me personally with two ablations. (Two ablations because of my several arrhythmias would probably be needed which could double my risk for complications)

2. An AV node ablation which would take out my AV node and prevent my high heart rates/atrial arrhythmias from getting through to my ventricles.  It would still leave my atrial arrhythmias continuing in my atria however but I would be less likely to feel them

3. A dual chamber pacemaker which would effectively control my bradycardia and could reduce my arrhythmia burden by keeping my heart rate at a steady, higher pace, out pacing any arrhythmia. I could then be given meds to control my tachycardia without risk of heart rate falling to dangerously low levels

EP (electrophysiologist) frankly said all the above options were good ones for me personally but he could not promise a complete cure for my arrhythmias or all of my symptoms with any of these options.

An ablation (option 1) he said would afford the best chance of a cure with typical Flutter up to 100% successful, with AF less so, up to 75-85% for long term success since so many factors like age, other health conditions including hypertension, heart disease, diabetes, lung disease, infection, inflammatory disease, thyroid problems, sleep apnea, gastric problems for example may all trigger and keep AF going.  But clearly he said pharmacological therapy (anti arrhythmic medication) would be less effective for me personally (only at best around 45% effective), so it was a no brainer that I had to choose from the above three options.  Because of my symptomatic bradycardia I finally decided to go with the pacemaker which would allow my EP to give me medication to tone down my arrhythmias without reducing my heart rate to dangerously low levels.    

Certainly a pacemaker has improved my quality of life and I feel so much better and my arrhythmias, although still sometimes present, are not occurring so regularly or causing such horrific symptoms.   I would thoroughly recommend a pacemaker for bradycardia alone but with the added bonus of it potentially having a beneficial effect on us folks prone to PACs and PVCs which can be triggered by a slowing (pausing pulse), and in my case allowing other arrhythmias like AF and non sustained VT to take hold.  A pacemaker has been an effective treatment for me personally where beta blockers and anti arrhythmic meds alone have clearly failed in the past.  In fact I have been able to stop my anti arrhythmic meds Digoxin and Flecainide since pacemaker implant and am now only on a low dose betablocker (Bisoprolol), so a quite remarkable success story for me personally

I echo Gemita's 'Yes'

by crustyg - 2020-06-20 10:15:13

Echo!  Pun intended.

There is some evidence I've seen that a well setup PM that primarily paces your RA can help reduce the chance of AFlut or AFib as it outpaces the clumps of cells that tend to fire off on their own.

So yes, bite the bullet and get the PM.  For me, while at rest a HR of low 40s was ok but I got faint when walking up the stairs.  Earlier this year (as a test) we turned off my PM and I could walk into the MRI suite with a HR of 28-31bpm, but I wouldn't try to drive like that.  My main reason was athletic performance - with a max junctional rhythm of about 115bpm (no A=>V synchrony) I was crippled.  Now with a PM I have restored AV-sync and a sensible maxHR - and *so far* no more AFlut (two ablations).

It's a big step and it's not a trivial thing, but you have to weigh up the benefits.  Your underlying condition that's given you a low resting HR is *likely* to carry on worsening.  You *may* be ok with a resting HR of 30bpm, but I doubt it, so the real question is PM now or later!

Re; Crusty and AV dyssynchrony

by AgentX86 - 2020-06-20 13:13:01

Crusty, that's very interesting.  I am in permanent flutter, hence the AV/his ablation and pacemaker.  Because of the AV ablation, I have no AV synchrony  and I think my max programmed HR is 130 but I don't think I've ever been much over 115 ("resting" is 50 or 80) and have no  real limitations.  I don't have a junctional rhythm, just a sustained PM pulse.  When I get PVCs it gasses me though.  Perhaps your issue wasn't the heart rate or dyssynchrony, rather an abnormal rhythm caused by the junctional rhythm?  The atrial "kick" is said to be something like 20% of the heart's output and the overcapacity of the normal heart is much more than this.

another yes

by Tracey_E - 2020-06-21 10:26:17

If you have symptoms when your rate dips, the pacer will make sure you never dip. You should do your research and take your time making a decision, but it's a bit of a no brainer to me. (speaking as someone who procrastinated and procrastinated then was amazed how energetic I felt after)

Thank you

by twodrifters - 2020-06-22 02:39:40

Thank you all so much for your responses.  I am on a steep learning curve.  I tend to need to do my research before making a decision which can then lead to procrastination, so it's difficult to find the right balance sometimes.

 I have to say that I am bit surprised by how glib people who don't have pacemakers are about having a pacemaker.  Mention a pacemaker and everyone has a friend who says it's a piece of cake.  I want to have realistic expectations.  It is also great to hear actual success stories.

My appointment on Tuesday was supposed to be a video appointment, which I am quite comfortable with, but the clinic has let me know that they changed the schedule and now I must be seen in person on Tuesday or wait a month for a video appointment.  We have a lot of Covid in our area and I don't think I'm ready to be seen in person as this clinic also does a lot of Covid testing, so I will probably be waiting a month.  Sigh.  But I still have a lot to learn so that's not all bad.  Thanks again.

success stories

by Tracey_E - 2020-06-22 11:07:38

The problem with coming to a place like this to read up is along with a lot of facts, you'll also run into a lot of people with rare complications looking for answers. Most of the ones who say it was a piece of cake are out there getting on with their lives, not here posting. It gets easy to start to think those complications are the norm when in reality they are less than 1%. For me personally, the surgery was easier than I built it up to be in my head and after I felt more energized than  I ever imagined was possible. 

People who haven't been in our shoes do tend to be glib about it. As surgeries go it's pretty minor, but it's a big deal when it's your body and your heart about to get a battery. That said, I got my first in 1994. I've never had a serious complication, it's never held me back from doing anything I want to do, I feel fantastic. Of course there have been a few bumps in the road, but overall it's just been minor inconveniences. I wouldn't go so far as to say I'm glib about it, but I truly do not think it's a big deal, and without it I would not be here so I'm nothing but grateful to have it. If it can improve your quality of life, I'll be the first to say just do it because it's so worth it. 

I've been hanging out here for about 10 years now. I understand the negative posts- things go wrong and people have questions, people are new and scared- but I make it my mission to post positive things to balance it out, to fill the gallery with photos of fun activities I never would have been able to do if I wasn't paced to counter all the post op pictures.

I've experienced first hand how amazing it can be.  I went from constantly tired and dizzy and not able to keep up with my friends to living a very active life. Growing up I was told my heart would never be strong enough for me to have kids. I was diagnosed at age 5, kids were not paced back then unless it was life threatening so I grew up very restricted, no sports or anything else that would stress my heart. Then along came the pacer and all those restrictions were gone! My youngest kid just graduated college, she moved to the mountains so we hike, ski, zipline when we are together. When I had the pacer 20 years I wanted to do something to celebrate so I registered for my first 5k and dragged my oldest kid, then in high school, to do it with me. She's in grad school now, totally addicted to running so we meet for races- 3 halfs, I forget how many 5k and 10k plus a mud run in the last year. I'm healthy and active, no one would look at me and see a heart patient. 

I would do the appointment Tuesday, JMHO. Most places have completely separate entrances for anyone with anything that might remotely be Covid. Get it over with, ask your questions then do your research instead of letting things fester in your head for another month and depending on Dr. Google. And who knows, we may be in the second wave in a month so you'd have to wait a lot longer than that. This is important.

Last thought, under 60 is bradycardia. Many do ok in the 50's but 40's is not at all borderline. When your heart rate is 40, your organs are being starved of oxygen. When you feel too tired to chew, that is your body telling you it's not getting what it needs. It's not just a limiting lifestyle, it's a dangerous one. 

If you ever want to chat, feel free to message me. 

Pacemaker can help

by Pinkit94 - 2020-06-22 14:47:48

Pacemaker can help with PVC/PACs. In a lot of patients, PVCs are an actual sign of bradycardia. The theory is that the higher the heart rate the less amount of PVC/PACs you would have. For some pacemaker work and for others it does not. Pacemaker is a lifelong commitment that comes with certain restrictions and complications. 

A PM it is.

by twodrifters - 2020-07-02 19:43:44

Thanks for your reponses.  Each one was helpful.  

I think that I have to some extent gotten used to not feeling well, over the years, due to one issue or another, and that sometimes I don't see the seriousness of the situation.  I think I needed a course correction in my thinking about postponing the appointment.  I went in as scheduled ready to have the PM conversation, and now there's a plan to move forward.  I feel good about that.