I started taking flecainide over three years ago when I started having some after my first (cryo)ablation. I had had almost 3 years with no significant episodes when I started having episodes again in February 2023. I had been waiting for Pulse Field Ablation to pass the FDA here in the US, so when I googled it in February, I saw it had just passed.
I had the procedure in June, and by the time I was able to have my follow up visit with the EP on Nov 1, it had been two months since I had had any AFib so we thought I was out of the woods. He said I could stop taking the Flecainide on December 1. Then, starting on November 8, I have been having episodes every other day or even every day in some cases. And lots and lots of ectopics, increased blood, pressure, anxiety, etc. A lot of these episodes were clearly marked as arrhythmia on my Apple Watch, but lots were marked as inconclusive and showed weird patterns that I wasn’t familiar with.
When I see him this past Monday, the EP did not seem terribly interested in the weird patterns when I brought in printouts. And of course, nothing showed up in the five minutes of them taking. episodes were clearly marked as arrhythmia on my Apple Watch, but lots were marked as inconclusive and showed weird patterns that I wasn’t familiar with. The EP did not seem terribly interested in the when I brought in printouts. And of course, nothing showed up in the five minutes of them taking an EKG, even though my watch was showing inconclusive, high heart rate, and other weird patterns both before and after they took the EKG.
He said we could try dofetilide which means I would have to be in the hospital for three days for loading, and also said that we could make another ablation appointment for March in case that didn’t work.
But I had been wondering if the flecmight have become pro arrhythmic in my system, even though it had worked for three years – until it didn’t.He said I could try going off of it, and I was wondering if anyone might share stories of their own experiences of going off flecainide. I’m willing to try the more drastic measures if this doesn’t work, but I think it’s worth trying.
He said I could go off it by just stopping abruptly, but it seems to me that tapering off would be smarter. Any stories out there?
Thank you as always, for your experiences and wisdom!
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hartbeast
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I am so pleased that you are able and willing to think "outside of the box" (sorry if it is not fully correct, English is not my first language)!
People expect too much from MDs who, to be honest, do not know enough about arrhythmias and, what is still worse, are not willing to listen carefully to the patient. We have to be own doctors, and Dr Google is very valuable for it...
I know that it is not popular to quate own comments, but here something I have just written in the post previous to yours:
""BenHall has written: "One thing is for sure it is not written in tablets of granite that pAF will get worse. It is quite untrue."
Me: Finally, someone who shares my idea! I did not dare to talk about it until now... If a person starts with real AF, with really high HR when having an attack, with ageing, during the time, this arrhythmia should tend to get milder, to stop and to get replaced with some other type of arrhythmias. The idea that it gets worse with the time is simply a prejudice, one of many that are being present around. Not ready to talk about details and, yes, I have no peer reviewed articles published...""
You may be a good example of AF getting milder/insignificant, so the medication that was of help in the past, has become counterproductive. If I were you, I would tapper flec down and see what the result.
Thank you for your thoughts, Responsable. I am immensely curious about this possibility. If my Pulse Field Ablation in June DID significantly reduce my AFib, then it seems possible to me that the flecainide could now be affecting me negatively, as it might affect a person without AFib.
Of course it’s also possible that I’ll need to try a different anti-arrhythmic or even a 3rd ablation. But if my EP thinks it’s worth trying, to stop the flecainide and see if these nearly daily AFib episodes abate, then I’m excited to be my own test subject.
I am of the brave ones (maybe of the stupid ones, lol) and I permanently experiment with my body, not fearing the consequences.
When I started losing my sight at ... 45 yo (baby-boomer disease) I refused wearing glasses in the beginning. I noticed that my problem, actually, is not reaching the focus but slower focusing on close objects. So instead of taking strong glasses right at the beginning, I chose the way to avoid glasses whenever possible. The result? I still (72 now) can work at the computer using +1,25 glasses, I can drive and walk without glasses, I use +3 or +4 glasses (left from my diseased parents) only for precise work. I have also experimented with -0,5 glasses, as opposite to corrections which are usually applied, with excellent short-term results. The medicine IS precious, but the knowledge is still with gaps and does not cover some area (say, disturbance of Autonomous Nervous System, which is the main cause of numerous chronic diseases).
I'm not sure if this is a helpful response. If someone is seeing an EP who specializes in electrical impulses in your heart, why would they not give good advice? Maybe your normal doc wont have the specialization to help, but an EP does. Listen to them over some dude telling you google has the answer.
Thanks for your response, Dennis. To be clear, my EP agreed that it was a good idea to stop the flecainide for a while before they go to the more extreme response of loading me up with dofetilide for three days in the hospital, or doing another ablation, which are the only other two options he suggested. So I am definitely listening to my EP. It’s just that I’m the one who came up with the idea of stopping the flecainide, and then he agreed to it.
I too believe its counter productive to say - it inevitably gets worse. Although I still get mine occasionally, I feel much better than I did 4 years ago.
I had it at night, almost every night when I was 55-60 yo. Now (72 yo), I hardly remember when I had it last time. Also, the symptoms have got less noticeable with the time.
During my time with Flecainide in my pre-ablation PAF years, I was very unsure whether Flecainide was doing anything for me. Sometimes it seemed to be, sometimes not. After both my first ablation (in 2002) and my latest one (Sept this year), Flecainide was very clearly working well.
I think it will work to do what it is designed to do, but whether the cussedness of AF actually lets it do that in a particular individual at a particular time, well that's another story!
I used for 2 years with no problems, then it ceased to work so I returned for ECG and other arrhythmias found, it just sometimes happens that way. Any substance which has the ability to ‘cure’ also has the ability to cause.
Yes, it happened to me this week. Since I stopped it on Monday I've had a wonderful peaceful sinus rhythm week. There has been a very similar drug called Encainide which was withdrawn due to too many arrhythmic events including deaths.
I think the elderly cardiologist I saw had come back from retirement to help after covid. He was amazing and after looking at my ECG told me Flecainide, which I'd been taking for many years, was causing more problems than helping. I stopped it and then when I went back to see him again a few months later he said my ECG was so much better. I felt so much better without out it too - had loads more energy. Now I just take a low dose of Metoprolol and Warfarin.
if I took Flecainide as a (pill in the pocket) early on for paroxysmal AF it stopped it. The first time I took it was in a well established AF and it caused atrial flutter. AF got worse, I was recommended to take Flecainide 50mg daily. Within a hour of taking it AF started which if I did exercise it became flutter. It was stopped. Had flutter ablation.
Just restarted it 4 days ago with DILTIAZEM. 2 days fine and 2 days within an hour after taking it AF started. One day lasted 12hours and 1 day 4 hours. Fast AF up to 175 beats per minute.
So in my experience it can stop arrhythmias and start arrhythmias.
Thanks, OceanPaddler. Flecainide seems to have been effective for me as a PIP for a couple of years before I started taking it every day, and it was flawless for three years. but the last month has been ridiculous, with arrhythmias or high heart rate or inconclusive readings every day.
I was put on Flecanide a few years ago and it ended up causing worse AF than I had prior to taking it. I lasted 3 days before telling my EP I wasn't taking it anymore.
I use Apple Watch 7. It records my Afib well. When mine states inconclusive it has usually been for AFlutter. I’ve been on Flec for 2.5 years. Originally it was thought it had changed fib to flutter. Post ablation for the flutter I was left on it as it was unknown whether AFib would return if it was stopped.
The Apple Watch is only capable of reading AFib so if you have other symptoms see GP or EP -only medics can determine if it’s anything to be concerned over - whether it’s a different arrhythmia etc
Thanks, Afibflipper. This matches my experience as well. Kardia is a little better at catching some other arrhythmias, and of course they have a service you can pay for to have someone look at them. When I brought in printouts of my Apple Watch, my EP barely glanced at them and did not comment. But he accepted that there were a variety of arrhythmias there, which I think is why he agreed that stopping the flec was worth trying.
Yes, I'm certain it can act very helpfully - or otherwise! I still think it's a great drug but I'm not at all sure we get great advice when we get it prescribed, even by an excellent EP.
You alluded to this. When we are ON flecainide we need to be more careful, I think. In my experience, breakthrough Afib while on the drug is potentially worse (even if far less common) than when not on it.
Long and short is I think to take the lowest dose that works for you. Be prepared to adjust and reduce.
I take 75mg a day and that's down from 200mg.
The single most important thing for me, while on flecainide and getting the Afib protection it gives, is to keep my blood sugar level steady. I'm not diabetic nor anything like it but on flecainide my triggers are very clear - unstable blood sugar, and also overdoing exercise, especially outdoors in cold air.
Eating healthily has a raft of other benefits of course so it's a good thing in the round!
Thanks Garaidh. Sounds like you and I have very similar triggers – blood sugar, exercise, especially in cold air. Since my stroke in 2018 I immediately cut out all alcohol and caffeine, cut out cow dairy, and almost completely cut out added sugar and processed foods of all kinds. I’m pretty confident that my fib would be a lot worse without having done that. On the flecainide , I had titrated up to 200 mg a day because anything below that was ineffective. As of Tuesday of this week, I have been titrating down again and all the crazy arrhythmias didn’t stop until I was completely off the flecainide. Crossing my fingers, but I certainly feel better in the past 3 days than I have since early November when these arrhythmias started up again.
Did you go off flec Dec 1 when your doc said you could? A little confusing there because you said the ectopics and other issues started Dec 8, which, to me, means Flec was keeping those in check because you stopped for a week.
An ablation will stop AF, especially paroxysmal, but will not stop other arrythmias unless those are isolated and treated. Flec is good for those, which is why I take it.
If you didnt go off Flec, had the ablation and are still taking taking it then keep getting checked out.
Tachycardia, PACS and other ectopics can be caused by anxiety and stress so getting that under control should help as well. Meds help a little, but the body under anxiety/stress will do weird things.
I was told I could go off the flec starting December 1, after seeing the EP on November 1. But instead, I started having AFib episodes every other day starting on November 8, just seven days after my meeting with the doc. I was able to see him again on December 9, after a month of having AFib episodes every day or two.
I was taking flecainide during the entire “blanking period” of the three months after my ablation, but had had no episodes between August 29 and my EP appointment on November one. That’s when he said I could give it an additional month on the Flecainide and then quit on December one, but then all Hell Broke Luce on November 8.
When I saw the EP again on December 9, I asked whether it made sense to try going off of the flec in case it was causing other arrhythmias. And he concurred.
In my experience- whatever the medics say - titration down from Flecainide is best unless it's yanking you into atrial flutter. Are you also on a calcium channel or beta blocker to counteract and tendency of the Flecainide to increase your HR? That is a typical approach. And for what it's worth - coming off meds within 2 months of ablation I think might be too soon. Many people wait several months, gradually reducing their dose as they do so. Perhaps that's more of a UK approach.
I did titrate - Seems unwise to stop them abruptly even though that’s what the EP recommended. I do take a beta blocker when I’m in a fib to bring the rate down to under 100, but my resting heart rate is so low (60) that I can’t take them every day.
My ablation was in June and I wasn’t told to stop until 6 months later (December 1), but when I was going into almost daily a fib episodes starting on November 8, that initial plan to stop on Dec 1was dropped.
OK. I can see why you're fed up getting almost daily episodes. What was your previous pattern I.e. pre ablation? And has anything changed recently in health, circumstances or lifestyle? Have you had a flu or COVID virus?
After almost 3 years of no episodes, while on Flecainide, I had an episode in September 2023 and then another that November. Then I had three episodes in February and went back to my EP. My Pulse Field Ablation was scheduled for June, and I had one more episode in late March before the PFA.
Between the ablation and the end of August, I had a number of episodes, as was to be expected during the healing period. I did have Covid for a couple of weeks in September – my first time - but still had no episodes from the end of August until November 8 (saw my EP on November 1) when the crazy increase in episodes began
I acknowledge that the results of the US elections on November 5 were extremely disturbing to me, so I am sure that contributed to my stress.
No other noticeable changes to my lifestyle. I’ve been a meditator for decades, as well as a teacher of meditation. I had been getting regular exercise up until November when almost any activity started triggering episodes.
Sorry for the distress. Funnily enough I did wonder (about the election result). I too am a long term meditator. You'd think our hearts would stay calm wouldn't you - but maybe that's what attracts us to meditation in the first place.
You need to catch what’s going on with a 24h/72h or even 7 day ECG and take it from there. You might want to look in to having an echocardiogram too. Unless you can identify what the problem is, you won’t know. You’re effectively asking for advice from strangers on the internet who don’t know your medical history, don’t have access to your blood tests or ECGs, and 99% of the people here couldn’t even read a 12 lead ECG, let alone give advice on medication.
To be clear, I am not asking for advice from strangers. I am asking for them to share their experiences. I am under care of the head of the arrhythmia unit of Johns Hopkins University and I am following his advice, including when he has giving me several multi day ECG monitors and echocardiograms.
My understanding of the purpose of this website is to listen to people’s experience. And I find that helpful. The responses that are the most helpful are people who very simply say “this is my experience.” Not people who give advice. As for the people who give advice, I thank them and I then talk to my doctors and follow their advice.
Thanks, karendeena. I asked my EP about other options and was surprised he went straight to either dofetilide or another ablation. I think it’s because my regular heart rate is so low, often under 60. So I take metoprolol when I have an episode, to keep my heart rate under 100 during the episode, but then over the next day or so my heart rate can go down into the 40s (occasionally even into the high 30s while I’m asleep) so I think beta blockers are not a permanent solution for me.
I was on Flecainide and Digoxin for over 10 years, at the start I was on a very low dose of both but towards the end of 10 years I was on a higher dose. After 2 cardioversions my heart specialist booked me in for an ablation. Interestingly I had to go off Flecainide and Digoxin 2 days before the ablation and on the second day I was in constant Afib right up to the operation.
After the operation I went back on my Flecainide and Digoxin and I reduced the dose over a couple of months. Once I was off the drugs I was getting several episodes of eptopic beats especially in the evenings. This caused me to become very frustrated which I think caused some of the ectopic incidents. My heart specialist had me wear a Holter for 24hrs which did show numerous short burst of ectopic episodes but not too many for him to be worried about.
I was then put on Eliquis as a safety measure and remained on it for a year. Slowly my ectopic incidents got less and after a year I'm off the blood thinners and feel great.
Looking back after my operation I think stress caused me to have more ectopic incidents because I so much wanted the ablation to have worked and to get on with life.
My heart specialist always advised me that I must take Digoxin when I take Flecainide as they work well together and if I feel that I need to go back on Flecainide as a pill in the pocket I must take both for at least 5 days as taking these drugs for only a couple of days can cause arrhythmias.
Thanks for sharing your experience, Bismark. It's fascinating (if a bit frustrating) how the standard of care varies with this AFib beast. I didn't have any AFib (or wasn't aware of it) until after I had a stroke in 2018, so the Eliquis is a lifetime commitment for me. In the past, every time I've worn a Holter (or Zio) it hasn't shown any arrhythmias, though I've brought in plenty of home printouts of Kardia and Applewatch readings. Crossing my fingers as I'm now at 36 hours with no AFib since stopping the Flecainide...
Twice I’ve been put on Flecainide and each time it made things worse for a week or so. The first time, after persevering I had no further trouble. I stayed on it until my ablation. The second time the EP tried something different.
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After Ablation
So what would you do?
Stopping meds
ablation after one episode of svt?
Ablation or Medication??
