I’m weighing the decision of meds vs ablation for my Afib.
I am currently doing fine on meds, Xarelto and 50mg Flecainide 2x daily that my cardiologist prescribed. However, I am waiting on a referral to an electrophysiologist. While waiting, I am trying to learn and gather as much info as I can.
I am wondering if any of you folks have been successfully managing your Afib with Flecainide for rhythm control and an anticoagulant for stroke risk.
If you have been managing with meds long term, I’d love to hear how you’re doing, and how long you have been managing with meds rather than ablation.
Thanks in advance!
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Metalmani
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All I can say is that I chose ablation to not have to take drugs, I didn’t tolerate them and felt far worse from the affects of the drugs than the AF. 2 Ablations gave me 3 years free of AF so it’s not always a one off procedure, many people have several .
I didn’t do well on the drugs but many people posting on this forum do OK. Be aware that Flecainide taken without Beta Blocker may cause other Arrythmias such as Atrial Flutter and I started to develop occasional long QRS.
It’s a very personal choice and I don’t think you can predict how you will react from other people’s experiences so my best suggestion is go see your EP armed with a list of questions such as:-
How many ablations do they perform each year?
What type of ablation would they recommend and is there a difference in success rates and recovery times?
Pulsed Field Ablation has just been passed by FDA for use in US - available in Europe for a while (you don’t say where in the world you are?) Do a search on PFA - there was a post about it very recently by someone who has just had one. It seems to have the similar outcomes but early studies show promise and possibly has fewer down sides.
I am sure you will receive multiple and varied answers and hopefully they will help but look for an EP in a Centre of Excellence who will discuss the pros and cons. Beware of any EP who is too optimistic of a one time ablation curing you for life.
Ask if AF returned, other treatment options?
If you want clear information to help you make up your mind then I suggest you go to the AFA - if in UK the Patient Day is SO informative and you get to meet top EPs and talk to many people who have managed AF for many years.
Thank you. Yes, I have a list of questions for the EP that I will be having a consultation with. You have some really good suggestions for questions too, thanks for those. I am in the United States, and I did ask for referral to an EP that has trained on the PFA, and at a hospital that has that equipment. Thanks for your insight and suggestions!
I could be the person that CDreamer was referring to as having had a recent PFA ablation. It'll be 1 month in a couple of days. I was back playing tennis in 2 weeks. Knowing what I do now AND with the much safer, quicker PFA now approved, I'd get in line for having it done before the queue gets long. At some point, counting on the meds to control AFib will probably become less effective over time. I waited just long enough in order to have this latest technique. Go for it. Truth is, cardiologists seem to be recommending ablation sooner rather than later. Many think that earlier ablations have a better success rate too.
Do you always need a beta blocker with flecainide PIP? I have been prescribed 200mg ( not tried yet) I've asked Cardiologist twice if I need a beta blocker and he said 'no'?
I’m not qualified to say but my understanding is that BB’s are prescribed alongside Flecainide to prevent Flec triggering Atrial Flutter so think best practice. I’m sure it also needs individual assessment as not everyone can tolerate BB’s, I’m one. I took Flec without - developed AFl & long QRS but by that time Flec wasn’t holding the AF anyways.
I have been on meds fof 14 years. At the beginning in Jan. 2010 I was already on statins & BP meds. With the arrival of AF I had added to my party bag, Warfarin and beta blockers.
More recently my cardiac consultant changed my beta blockers to Sotalol. Late last year/early this year I did have a flirtation with Edoxaban lasting 3 to 4 months but chucked it away - too many horrible side effects.
On balance meds alone - no problems.
In the beginning I did have a discussion about an ablation but I rejected that idea.
When my afib burden increased to weekly episodes, I successfully controlled my afib for a year with daily Flecainide and the nodal blocking agent, Diltiazem.
My decision to finally have an ablation was based both on my age and the desire to cut back on medications.
The age factor weighed heavily because I was already into my 70s and if the Flecainide stopped working, I didn't wanna have an ablation in my 80s when my overall health may have deteriorated. If I was younger, I might've carried on with the Flecainide longer.
I had a cryoblation 15 months ago and it was a success. So playing Monday morning quarterback, I made the right decision 😀
So far, I’ve found Flecainide a great solution for me. I started on this journey 5 years ago with a heart attack (nstemi II ), this was my introduction to paroxysmal Afib (the suspected root cause).
I started out on 150 mg of Flecainide and reduced to 2 x 50mg at the beginning of the year. I have been very stable with no discernible episodes for 4+ years bar bouts of ectopics. Current plan is to try to titrate off Flecainide altogether and see if I can maintain NSR without it.
I don’t need a regular beta blocker, it’s only to be used for an episode, as part of my PIP plan. An anticoagulant was removed a few years ago, as I am stable and currently below the risk threshold. Usual risk mitigation drugs for BP and cholesterol.
All the medications are well tolerated, annual checkups are fine and I lead a very fit and active life. If the current titration experiment doesn’t work then I don’t see any reason not to go back on a maintenance medication. If my condition changes radically then I may need to contemplate the ablation path but at moment, it’s not required.
Good to hear your experience so far! Thanks so much for your input. My thoughts are kind of along the same lines. If the meds continue to be well tolerated, I may just stick with that until that isn’t the case. Lots to contemplate, and thanks for sharing your experience.
Ablation doesn't always mean no meds. There are lots of members on this forum that have had ablations and still take drugs, for me it was one ablation/drugs and a Pacemaker!
You are so right about that! I’ve had two ablations, five cardioversions, one cardiac arrest and was still on all my heart medications. Also I had to have a pacemaker defibrillator implant. Still on most of my heart medications . Came off my Amiodarone just a week ago and I’m happy about that! I was on that horrible drug for six months. I don’t think I will ever get off the heart medications so I’m trying to just deal with it and trying to do what ever I can to avoid having afib again.
Once you have A/F I think it is a 'friend' for life, learning to live with it is the key, how much interference is another key. I had it at 54, it gave me a stroke at 56 and I was then invalided out of my career job, moved home to the seaside, enjoyed good long walks, restored physical health and went on from that until the condition over- rode the drugs, more and longer A/F bouts, then ablation which failed and then a Pacemaker and drugs but you learn to live with it and know your limitations and any triggers you may have and live the best life possible, keeping as fit as possible and don't spend your life worrying about your death, life is for living, try and turn the negativity in to positivity xxx
Thanks for your thoughts and input! All good things to keep in mind for sure. Yes, I’m sure I am in good enough physical shape for an ablation, but still not sure that is the right course for me. Just wanting to hear others experiences, and learn all I can before me appt with my EP. Thanks again.
I have been managing my AF with medication (first Sotalol, last Flecainide) for over 6 years. The last few months even without any rhythm medication!
Contrary to the actual protocol, I don’t consider ablation a first –or even second- option in the treatment of atrial fibrillation.
Let me explain you why: one of my best friends is a retired cardiologist with +30 years of experience and suffering from AF himself. I share his professional opinion that ablation is a very invasive procedure, that carries too high a risk for very serious complications, has a rather high mortality rate, and is often inefficient. Moreover there is a massive dose of radiation involved, it often implies general aenesthetic, and a long recovery period, with no guarantee whatsoever for succes.
If it would be the treatment for a deadly disease, one would have no choice, but patients with AF can live a long and active life (my mother lived to be 94 with the condition) with proper rate control and anti-coagulation medication.
So, unless I would be so symptomatic that AF made my life completely miserable, or that the chances of developing into heart failure were excessive, I would never consider having my heart damaged on purpose, after my medical team did everything in their power – after my heart attack- to limit the damage to this important muscle to the absolute minimum.
I’m baffled to see how many people are willing to undergo this procedure, sometimes even after having ‘only an AF-episode once in a blue moon’.
Obviously it’s personal preference and circumstances but if I were in otherwise good health and reasonably fit, I would much rather chance the very low incidence of serious complications of a procedure which has fairly high chance of success against having to take very toxic drugs for the rest of my life - which have already harmed me.
If you read the latest stats and studies on ablation the odds - if you are a suitable candidate - are of ablating AF are high and complications rare. Recovery times I agree are often understated.
Yes, and certainly even more choices are underway. A whole new approach is being investigated as I write this. It will focus on influencing the vagal nerve rather than the heart itself.
I have read somewhere that people with AF should continue with the anticoagulant even if the AF is cured. Something about the fact that if you have AF then you are still at risk of stroke because of the type of physiology or weakness (bad word) in us.
2 years now, Flecainide and Diltiazem. Not one episode; however, my electrophysiologist wants me to have an ablation as I am fit and 61 years old.
I would suggest you research Pulsed Field Ablation; it is a game changer and is now available in my region. So now I am thinking later this year for the ablation.
Yes, thank you. I have been reading about Pulse Field Ablation. The EP that I asked for a referral to has been trained in this, so I will be talking to him about it. Thanks for your reply.
I have been on bisoprolol for AF flutter for nearly ten years. It seems to control it unless I am extremely stressed. Then I might take another tablet which brings the rate down. I take nothing for rhythm control. I gave up alcohol about six years in and this largely stopped the out of rhythm beats. However I do get episodes of being out of rhythm. I might feel it everyday for twenty minutes for a few weeks and then nothing for a few weeks. I have thought about ablation but at the moment I don’t think my AF burden justifies it. And I don’t really want my heart zapped and scarred unless I really have to. I expect I have left it too late anyway. Good luck.
Talk to the EP when you get to them - they are the best to advise you based on your particular heart. I’m pleased I had an ablation I really didn’t want to be taking rhythm or rate meds for life…
For me it was all about AF burden. Initially my AF was horrible and verged on congestive heart failure but was diagnosed to Graves disease which is now in remittance. Still occasionally get bouts of AF which last about 2 weeks at most and well controlled (pretty much asymptomatic) with low dose bisoprolol for rate control. Nothing for rhythm control. Other meds for controlling hypertension. And, of course Apixaban for clot prevention. Had a visit with electrophysiologist who had me do a cardiac MRI which revealed nothing - was looking for scaring and atrial enlargement which can be a precipitator. Was on a PIP option of 300mg Flecainide but this was counter indicated after a short bout of A-Flutter instead of fib. Cardiologist and electro both have suggested PF Ablation but so far I have resisted as the episodes are well tolerated and pretty much asymptomatic. I am 72 and in the UK.
hi, I’m in total agreement with Abbyroza. Everything is exactly the way I have always felt and believed. But having been on Fleccanide for many years and well controlled there has been no reason for me to ever consider wounding my heart with an ablation.
As others have difficulties with their drugs and accept the operation they know what is best for them. I’m sticking with the medication route.
HI. I am nearly 70 and have had PAF for just over 10 years. To begin with, it was only every 9 months or so once I got started on 300mg Diltiazem and warfarin. I was offered ablation straight away but didn't fancy it. Then it became a bit more frequent and I had loads of tests which showed no physiological reason and was put on 100mg Flecainide as a PIP. I worried about taking this and put it off for ages, then finally took the plunge one night and there were no ill effects so I started taking it every time I had an episode. During Covid, I was changed from Warfarin to Rivaroxaban. However, about 2-3 years ago, the episodes were becoming more frequent - weekly - and as AF is a progressive disease, I decided to go for the ablation. I was scared stiff by all the information I was given but overall felt it was better to have it while still relatively fit rather than wait until I was older and less fit. I was told it had a better chance of success if done while the AF was not permanent and my second EP told me that Flecainide could kill me and he wanted me off it. Anyway, I had catheter RF ablation last August and it was nowhere near as scary as I had imagined. My EP told me it was a success and took me off the Diltiazem and Flecainide. Unfortunately, I had an episode the day after the procedure so the EP put me back on the Diltiazem but told me he didn't want me to take the Flecainide. Since then, I have had about 4, maybe 5 episodes but they have been very brief, only lasting a couple of hours and have gone without any medication. All in all, I am glad I had the ablation and I don't worry about having episodes any more.
My sister went three years without an ablation or any afib incident while using flecainide. I am on flecainide and metoprolol now, and haven't had an incident since I started. She wasn't prescribed metoprolol because her blood pressure was already too low. I'm on both because my blood pressure is a bit high. She felt the effects of the drugs very strongly. I never felt the effects of any of the drugs I took except sotalol and a couple of the blood thinners, which gave me stomach cramps. I'm on eliquis now which I cannot feel in any way. My sister started having incidents again after three years, and is now about to have an ablation using pulse field ablation (PFA).
I guess my main point is that everybody responds to each of these medications differently, even when they are genetically similar. I saw a post on this bulletin board from somebody who went 20 years on medications before they needed an ablation. The only factors which seem to be nearly universal is get Eliquis as your blood thinner if you can, (some of the healthcare providers won't use it because it's more expensive, but sometimes you can ask for it and get it) and and if you get an ablation use PFA because it appears to have a shorter recovery time and less chance of accidental damage.With PFA, you don't even have to stop using your blood thinners during the operation. PFA has only been recently accepted by the USA, so I am waiting as long as possible to give the doctors some experience using it.
Thanks for sharing your experience! Yes, my blood pressure is also low, hence, no beta blockers. So far I’m fine with xarelto ( also one of the new anticoagulants similar to Eliquis) and Flecainide and not feeling bad affects from either so far.
As an active 65 year old with no other health conditions - here's my Flecainide experience
After several episodes of symptomatic Paroxysmal AF in 2012/13 I was given Flecainide to use on a "Pill in Pocket" basis. A dose of 200 - 300 mg stopped each episode within 6 hours and I reverted to NSR.
But, over the next 2-3 years, my AF episodes gradually became closer together (each episode of AF makes a further epiodes more likely). When they reached monthly my GP (also a cardiologist) agreed to try a low daily dose of Flecainide (2 x 50mg / day) as a preventative measure. This worked well and kept me completely free from AF for 5 years. Only side effect I had was mild tinnitus (constant ringing) in both ears which I put up with. After 5-6 years I started getting the some "breakthrough" episodes of AF, which I stopped by taking an extra an 100 - 150 mg as "Pill in Pocket". To stop the breakthrough episodes my daily Flecainide dose was then increased to 3 x 50mg / day. Around the same time I started noticing some numbness in my feet and a "pins and needles" tingling sensation in my fingers, so I dropped back to 2 x 50 mg/day and opted for PVI via catheter ablation in 2022. I had a couple of episodes of AF soon after the ablation (both stopped with extra Flecainide) but, after a few months to let things settle, I very slowly tapered the flecainide dose down to nothing. I've now been totally medication free for 4 months with no AF. My tinnitus and some numbness in my feet are unfortunately still there, but the tingling fingers have gone. I now sometimes get brief spells with Premature Ventricular Contractions (almost certainly due to removal of Flecainide), especially under stress, but those seem to be settling down as my heart adjusts.
So overall, I was happy with Flecainide. My heart realy liked the relatively low daily dose. It stopped AF and eliminated ectopic beats - my heart ran really smoothly on it. If it wasn't for the tinnitus and then some possible nervous system (peripheral neuropathy?) side effect concerns, I'd have stayed on it and not had an ablation.
One thing I would say is that AF tends to be progressive condition and will eventually become permanent if not treated. So, if you can prevent episodes from occurring in the first place, it can help slow or even stop the progression.
Thanks so much for sharing your experience! So far, Flecainide at 50mg 2x per day is stopping my paroxysmal episodes from starting. By the time I’m able to get my referral and appt with an EP, I will hopefully have more info to share with him. Thanks again! I hope you continue to feel well.
I had meds for 2 years (Flec and Biso with Edoxaban for anticoagulantation). It was only from this forum that I learned about ablation. Then I had an appointment with an EP Cardiologist and had an ablation. Thank goodness tho I wish I had seen him from the start. All the new research is pointing in the same direction - ablation from the point of diagnosis is superior to meds. So it’s ablation for me. Hope this helps.
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