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Is it better to put up with ectopics ( around 1% burden) or take a daily dose of Flecainide to (almost) eliminate them?

John3333333 profile image
29 Replies

Since AF ablation months 9 ago, I suffer from daily couplets, triplets , and other odd heart flutters (never more than a few seconds long). If I take 100mg Flecainide twice daily, it pretty much eliminates all my ectopics (lower doses of Flecainide don't make too much of a difference). I've been considering coming off Flecainide and just putting up with the ectopics - does anyone have any thoughts on this strategy?



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John3333333
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BobD profile image
BobDVolunteer

Have you tried the slow deep breathing trick which works for so many of us? Use diaphragm not shoulders and slow to six or less per minute for at least five minutes.

John3333333 profile image
John3333333 in reply toBobD

Deep breathing works for me when I'm experiencing a lot of single PACs/PVCs, but Flecainide is the only drug I've taken that reduces short runs (salvos, triplets etc) of ectopics.

Bagrat profile image
Bagrat

I feel that's a very individual decision. My flecainide was increased back to 100 twice daily a year ago ( never had an ablation). I feel like a new woman.

The BUT is that I have issues with anxiety from time to time so feel super relieved to have lost the ectopics or whatever arrhythmia the Consultant thought it was or might be ( he was treating empirically I thought).

The other 2 things are that my choice at 78 may not be yours, if you are younger. How the flips and flops make you feel also has a bearing on this.

John3333333 profile image
John3333333 in reply toBagrat

Hi. Flecainide is effective for me, but I'm just a little concerned about any negative effects due to long term use (I'm 42).

Bagrat profile image
Bagrat in reply toJohn3333333

I understand your concerns. I've been taking it regularly since 2011 but I am fairly ancient!!

Ppiman profile image
Ppiman

I certainly get lots of ectopics and have been told it's a feature of my Wide QRS / LBBB by my GP. I'm quite "happy" with them in that sense and don't think I'd want to take anything apart from a betablocker (which I do when they are particularly troublesome). Deep breathing does nothing for me, sadly.

Steve

John3333333 profile image
John3333333 in reply toPpiman

I take 1.25mg Bisoprolol, which lessens the intensity of my ectopics and occasional panic attacks - which I think are caused by ectopics. Unfortunately, Bisoprolol does not reduce the number of irregular beats I experience.

Ppiman profile image
Ppiman in reply toJohn3333333

Yes - same here. I only take it when I get a racing heart (100-130) with the ectopic beats. The two seem to cause me more anxiety and mild chest discomfort, too. Not pleasant.

Steve

Brizzy50000 profile image
Brizzy50000

I can only say from my own experience, I came off all meds (except Rivaroxaban on it for life now) after my RF ablation(4 years ago)after a few months, I have had ectopic's but after taking magnesium turate they have all but disappeared.Hope things settle down

in reply toBrizzy50000

Hi how much magnesium are you taking daily?

Brizzy50000 profile image
Brizzy50000 in reply to

I take these daily

Information
in reply toBrizzy50000

Thank you!

Brizzy50000 profile image
Brizzy50000 in reply to

They are a little bit more expensive than some brands but Biocare are very good i have tried others but found that these do keep the ectopic's to a minimum, some others did not, so I think you get what you pay for

in reply toBrizzy50000

Ok..i will give them a try!!I have taken Drs.best. not a lot of noticable difference.

Brizzy50000 profile image
Brizzy50000 in reply to

They don't work for everyone but they certainly do for me

2learn profile image
2learn

How do you know you have ectopics if they only last a few seconds. Are you monitoring your pulse 24/7 and if so why. Ectopic heartbeats are usually not a cause for concern, and they may occur for no known reason. Lots of people have them without knowing. So talk to your doc about if you can ignore them and don't need meds.

in reply to2learn

I have eptopics. They are horrible. How can you ignore them? They are debilitating. How some people don't feel them is beyond me. I take 12.5mg metoprolol in the morning and at night. I have a slow resting heart rate 50s at times. Doc doesn't want to increase dosage due to that.How can people not feel these? I dont monitor mine and try to ignore them. Its impossible.

Bagrat profile image
Bagrat in reply to

I agree. I also have dry eyes. I mention this only because these 2 inconveniences are more obvious to me when I am tired, anxious or stressy, thus my attempts to use meditation and mindfulness, which is paying off

Autumn_Leaves profile image
Autumn_Leaves in reply to

Agree. Ectopics are awful especially if you have a high ectopic burden. The odd one now and again is normal for most people. We all know that. But when it’s all day, every day, every minute of the day, that’s not easy to live with. I have a high ectopic burden and yes, it is debilitating. And no, deep breathing doesn’t do much, nor does magnesium, nor does eliminating caffeine, nor has anything else. I have several thousand per day. I also feel every one. I honestly wish I didn’t feel them. Unfortunately 2.5mg Bisoprolol isn’t doing much either. Most disappointing. I’m on the waiting list to see an EP.

Prince123456 profile image
Prince123456 in reply to2learn

it depends what type of ectopic beats you have, mine was multi focal PVCs which eventually on occasions caused runs of none sustained VT. to cut a long story short I ended up having an ICD fitted because my PVCs became very frequent and was causing me to be exhausted. My cardiologist told me every PVC you have is a risk of it becoming VT. I have a normal heart by the way. I have tried many different types of meds Verapmil / Bisoprolol / Nebivolol but none of them worked. I was referred to an electrophysiologist who recommended a trial of Flecainide I take 50mg twice daily and thankfully they have got rid of 90 % of them. I have a review on 19/09/22 with my EP and I cannot wait to thanks him for recommending Flecainide.

healingharpist profile image
healingharpist

Hi John, Have you ever tried metoprolol? 25 mg per day has gotten rid of all my ectopics and no side effects. Diaphragmatic breathing helps but sometimes it's only temporary. Keep trying, something's gotta work! Wishes for improvements soon... Cheers, Diane S.

in reply tohealingharpist

Isn't working for me. The metoprolol. 😒Been on it 1 year. At my wits end.

I take metoprolol 25 mg a day has not helped my eptopics at all. My cardiologist mentioned this drug you're talking about. I haven't tried it yet worried about side effects are they bad?I'm desperate. I find these skipped beats and flutters to be a nightmare.

John3333333 profile image
John3333333 in reply to

Do you mean Flecainide? If so, then it is very effective at keeping my heart in NSR. It is my understanding that Flecainide should only be taken by people with structurally sound hearts. I haven't experienced any side effects so far ( I've been taking a daily dose for 8 months).

listerines profile image
listerines

I have a similar situation where post ablations my pacs/ ectopics have increased substantially. Have had some success reducing ectopics with breathing exercises, meditation/ mindfulness, light exercise and supplements (mag taurate and co-q enzyme 10). However, flecainde seems to be the pharmaceutical that helps the most (tried just a beta blocker but this did nothing for the high ectopic burden experienced). I did try to come off the flecainide on a few occasions on the direction of my EP but quite quickly the ectopics and Tachy runs increased and not long after that started triggering afib break through episodes. As can be expected went back on the flecainde and pacs got under control again (though still have some days where am very aware of ectopics/ runs of ectopics).

Like you though I am concernedabout long term use of flecainde (age 49)but also the fact that over time it is a drug that can stop working (bit of a double edged sword).

Wondering if your ectopics trigger afib? If not, could be worthwhile to see how you can handle the ectopics without meds, with a fallback plan of going back on the meds if you are having challenges. Wishing you the best outcome - keep us posted.

MikeThePike profile image
MikeThePike in reply tolisterines

I can't understand why AF ablation triggers ectopy or if another ablation can eliminate them. Does anyone know the answer to this? Flecainide works for some but clearly does not target ectopics. Magnesium does not work for everyone and no one really knows the long term side effects of such high doses everyday. More research is definitely needed.

John3333333 profile image
John3333333

My ectopics can trigger panic attacks (including sinus tachycardia) but not atrial fibrillation, thankfully.

I stopped taking my daily dose of Flecainide last Sunday - my cardiologist said I could return to PiP Flecainide management if I wanted to give it a try. Since then, other than the odd atrial couplet (I caught a few on Kardia 1L) and a slightly slower (52 bpm) resting heart rate, I've been okay.

I have a 48 hr monitor arranged for Friday, and, honestly, for the first time, I'm hoping that I don't catch any irregular beats. I just want things to stay (mostly) steady now.

Your ectopics/atrial fibrillation/tachycardia experience sounds quite similar to mine - is a low daily dose of Flecainide (50mg X 2) effective for you?

MikeThePike profile image
MikeThePike

My PVC burden was about 0.9% when last checked about 5 months ago but I feel every one of them. I'm just trying to live with them for as long as I can . I hope that one day there will be a cure or maybe ablation technology will improve so they become safer. I am very reluctant to take any beta blockers or flecainide because these drugs were not designed to tackle ectopics. That likely explains why they don't work well for everyone.

Bailey2004 profile image
Bailey2004

I’m also suffering ectopics since my AF ablation 4 and half months ago. Came off meds 3 months after ablation and they started. Put me back on bisoprolol and eased them to every 4 days which lasted 5 weeks and felt fine but then 2 weeks ago it stopped working and I’ve been exhausted ever since as getting many episodes daily. Put me on verapamil instead a few days ago and so far they’ve got worse and heart rate and BP has increased. Next option is to go back on Flecainide so hoping my EP suggests that next Fri at my appt. It’s draining and I’m only 48 too. Really impacts work and just get so frustrated and anxious which is a vicious cycle. Hope yours settle.

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