Pacemaker & daily meds for AFib, what can I expect?

[OurCoach]

I am interested to hear from anyone with experience about having a pacemaker installed and then daily AFib medications - I think I will be given something called Flecainide. As my HR falls into the 30's and 40's I can't take anything daily, the pacemaker will address that.

Right now I have AFib attacks about every two or three days. I had an ablation five months ago, but so far hasn't made a difference in the frequency, just the duration. I am on the list for a second ablation, but the waiting list is a mile long. I can get a pacemaker more quickly I'm told.

My (fantasy?) goal is to be AFib free and medicine free one day. I take Eliquis daily and 12.5 mg Metoprolol when an attack starts.

What can I expect to be different? Will daily meds stop the frequency of AFib attacks? Right now I get them for all the silly reasons people write about - I ate an ice cube of all things and one started, gargling with salt water started one, walking up a steep hill, reading a book, it's a monster of an affliction.

I have already stopped as many things as I've read about here - alcohol, caffeine (no more tea, boo hoo), chocolate, sugar, sleeping on the left side, eating too much, eating, too fast, I'm not overweight, BP is low, no other medical issues, healthy heart. Can't do anything about my age.

I'm wondering if there is a chance for quality of life improvement with the recommendation of a pacemaker and daily meds. Thoughts?

[bantam12]

I have a pacemaker and just take Bisoprolol and Apixaban. Definitely better since the pm went in, glad I chose that rather than an ablation.

[OurCoach in reply to bantam12]

thanks bantam12. What does "better" mean for you?

[bantam12 in reply to OurCoach]

Only get faster or irregular beats very very occasionally now and only ever for seconds rather than hours or days, hardly any pauses which were my biggest problem, not breathless when doing normal things, just generally better, bpm down to 60 from high 80s 90s. I missed my pacing check in April so will be interesting to see what's been going on when I go next month, only had the pm for 4 months so still a learning curve.

[OurCoach in reply to bantam12]

Thanks and that's very encouraging. I'd love to live without frequent AFib attacks taking over. Occasional sounds ideal. Good luck with your check up.

[bantam12 in reply to OurCoach]

Thanks, yep go for it, I'm really glad I did,

Good luck to you as well 🙂

[BobD Volunteer in reply to OurCoach]

Please be aware that a pacemaker alone will not stop AF but it may allow stronger drugs to be prescribed whilst the pacemaker stops your heart rate dropping too far. It can't control fast rates of course. Even pace and ablate where the AV node (the heart's natural pacemaker) is ablated will not stop the atrium from fibrillating .

[OurCoach in reply to BobD]

Thank you Bob. I am wanting to educate myself and manage my expectations. I have three weeks to decide if I want to proceed. My ego is in the way.

[CDreamer in reply to OurCoach]

Just a comment on Bob’s reply - I would amend to ‘May not control AF’. I know of a growing number of people for whom it did but don’t be disappointed if it doesn’t but what I found was that once in NSR, the pacemaker seemed to just have a continual, positive affect so my HR became so much more stable and regular resulting in improved QOL.

[OurCoach in reply to CDreamer]

An improvement in QOL would be welcomed. Of course I'd like all the potential benefits I can get, but that's a start.

[bbigH in reply to OurCoach]

Hi after 3 failed ablations, last sept 2019 in june 9th had pace and ablate at LHCH and the improvement is great.I still get afib but no symptoms and regular pulse rate around 81bpm.I was able to stop betablockers and halve my furosimide and feel better than in last 3 years.I am now totaly dependant on pacemaker but my last 4 years couldnt be called living im happy to have had this last resort op and can now exercise and even have a drink now and then but that is just my opinion.Cheers Harry

[OurCoach in reply to bbigH]

Harry, I like your opinion. Thanks for sharing. This posting is helping me set my expectations.

[Ormegirl in reply to bbigH]

You have given me inspiration. It has been offered to me at same Hospital. Quite a big step as my heart rate sometimes 145.Good to know it's successful and Life changing in a good way. Wonderful hospital.

[opal11uk]

I have written on this topic several times if you look at past posts. I have had my pacemaker and daily dose of control drugs now for 3 years and my life has completely changed for the better, no more A/F. I too had a failed ablation. The op is somewhat minor, a small pocket made in the muscle, 6 weeks recovery in as much as you mustn't overstretch until it is well bedded in and then regular checks and pacing and once drug and pacing loads are at the right level all should be well. I now have yearly checks and thats it. The pacemaker you will be fitted with will be smaller than the one I had so all in all a good job for me and I am sure for you too.

[OurCoach in reply to opal11uk]

Thank you opal11uk Ii shall search out all your previous postings as I want to learn all I can about what is possible for me. So far I am really encouraged.

[opal11uk in reply to OurCoach]

I can only speak as I find and I find that it has changed my life completely and it is so good to be free of A/F symptoms and it has helped me to relax too which is a plus when you suffer from A/F/. Good luck x

[Clarrie]

I had a pacemaker fitted on 1st June due to passing out when returning to NSR and take Sotalol and Apixaban. So far so good and I was given a home monitor so do not have to go back and forwards to hospital for checks.

[OurCoach in reply to Clarrie]

Thank you Clarrie, this sounds very encouraging for you and for me too!

[willec49]

As others have noted, the Flecainide would most likely keep your heart in sinus but, if it lowers your HR too much, then the combination of the two sounds like the ticket. I am on Flecainide which has done a good job with the AF but my heart rate is usually in the mid to high 40's. So far that hasn't been too much of a problem. Knock on wood....

[OurCoach in reply to willec49]

i'm knocking on wood with you too! thanks for the reply, everything is helping me now get my head around this.

[CDreamer]

I had a pacemaker - re-synchronisation therapy type - worked for me and I don’t take any drugs other than anticoagulants and have had no AF now for about 8 months and then only 2 AF episodes since implantation in Oct 2018.

If taken for a short period to establish NSR Flecainide, was helpful in stopping AF but not a drug I would want to take for ever.

[OurCoach in reply to CDreamer]

CDreamer, thank you for sharing. Why don't you think Flecainide is a drug you would not want to be on for a long time? Anything I should know?

[CDreamer in reply to OurCoach]

It has toxicity, max dose in 24 hours = 300mgs. I would suggest you research possible affects.

I was advised to take my 1 st dose under medical supervision, which I did at my GP surgery. I had to wait 3 hours until an ECG showed no ill effects. It is one of the more effective drug treatments for AF, but remember all drugs have effects.

[OurCoach in reply to CDreamer]

I soooooo appreciate this forum. Thank you! this is just the sort of information I want to have when I meet with the EP (if being on zoom is considered meeting) on July 14th. I am trying to create a list of questions to ask as I notice I am like a deer in the headlights when I talk to doctors and go blank. Too often I leave an apt feeling as if I have been 'talked at' and I don't want that for this important decision.

[Palpman]

PM,s do not decrease heart rate. It may be just coincidence that the rate decreases.

It can inject extra pulses if normal pulse too slow but it cannot absorb some fast pulses if too fast. That is what ablations are for.

[OurCoach in reply to Palpman]

yes, I'm understanding that is the role PM plays. and I need as I used to go too low when I returned to NSR which caused me to pass out and hit my head and have a brain bleed. Not something I want to do ever again.

[JudyMarieC]

My afib journey began early in 2017 just before turning 70. I had an ablation and cardioversion along the way with limited success. After the ablation, I was placed on Flecainide, 50 mg. twice a day, Metropolol, 12.5 mg. twice a day and Pradaxa, 150 mg. twice a day. Fast forward to March, 2019. My pulse rate, which had always been low, dropped into the 30s. I went to the ER and wound up having a pacemaker implanted the next day due to sick sinus syndrome. I can honestly say that I now feel better than I have since afib started. I have significantly fewer episodes now. I can go several weeks without afib and, when it does occur, the episodes are significantly shorter - a day or 2. My EP has instructed me to increase my flecainide dose once in a 24 hour period and that seems to do the trick. My pacemaker is programmed to override afib but has never been successful in doing so. Prior to my ablation, my afib had been continuous for several months. After the ablation, it subsided somewhat but I continued to have prolonged episodes. So, in a nutshell, my quality of life has greatly improved. Is it due to the pacemaker? Probably, but also the fact that after receiving it, I was able to drop 18 lbs. I also drink a 12 oz. glass of electrolyte water every day. Other than that, I just try to eat healthy and exercise about 30 minutes on a stationery bike and/or treadmill most days. Getting a pacemaker is a big decision but, for me, I didn't really have a choice. Good luck to you!

[OurCoach in reply to JudyMarieC]

Thank you JudyMarieC this is a good story for me to read. And i'm pleased your QOL has improved, I want that too. I'm running out of changes to make to my lifestyle as I stopped eating/drinking all the things on the list and I don't really have much weight to lose. I simply long to be AFib free as it shows up too many times in a week and spoils my fun!

[Crystalbowl]

I had a CRT (cardiac resynchronisation therapy) pacemaker implanted on 31/10/19 for HF. I also have permanent AF which I no longer notice but it seems the pacemaker is not working at 100% efficiency because of the AF. I take Nebivolol, Digoxin, Riveroxaban, Candesarten, Fuorsemide and Spironolactone. I resisted taking meds for a long time but was put on most of these in hospital in 2019. I don’t think the pm has made much difference to me. I am still quite breathless on exertion and have problems with my circulation - purple/blue/white hands and feet. I have been going out for a walk just about daily during lockdown averaging about 5,000 steps most days but sometimes double that or more now as I sometimes meet a friend for a walk as well as the daily walk with my partner. I live on a steep hill in a 4-storey house so gets lots of practice with stairs and hills but I am disappointed that I do not seem to have improved during lockdown. I also have a monitor at home so the pm can be checked virtually as it was last month. My bpm is around 70. My BMI is about 18 so I am definitely not overweight. The operation went fine and I was kept in overnight and discharged the following morning. You can’t drive for a week afterwards and you have to notify DVLA that you have a pm and they contact your surgeon to check you are safe to drive. Good luck!

[OurCoach]

Thank you for sharing your experience. It is useful to me.