My heart story... any advice is appre... - Atrial Fibrillati...

Atrial Fibrillation Support

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My heart story... any advice is appreciated.

John3333333 profile image
24 Replies

I underwent an ablation for AF almost 3 years ago. As far as I am aware, I have not experienced AF since the procedure, which I am very thankful for. However, my ectopic beats burden has increased dramatically post-ablation. I now have to take daily flecainide and bisoprolol or I will experience bigeminy and various other frustrating ectopic rhythms for most of the day. Weirdly, lying down, which used to trigger my AF, causes my ectopics to stop almost immediately. Unfortunately, due to work and childcare, I am not in a position to just lie down at any point during the day, so I currently depend on drugs to limit my irregular beats.

Is anyone in a similar sort of position on their heart journey, and will the ectopics I am experiencing just switch to AF again? Also, has anyone taken flecainide for 20+ years? I am in my early forties and, if my condition stays the same, I will probably be on antiarrhythmic drugs for some time. My cardiologist seems keen to keep me on meds, as he thinks an ablation procedure for my ectopics carries a low chance of success.

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John3333333
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24 Replies
Cliff_G profile image
Cliff_G

John,

I had a successful ablation age 48 but I was quite possibly in permanent AF by then, which even these days is a challenge for ablation. I was therefore discharged on 200 mg/day of Flecainide and stayed on that for 15 years. The Flec helped to quell my low burden of ectopics for that time. I then had an aortic dissection, age 63, and massive open heart surgery which brought my AF back. After some years on Amiodarone (which had converted me but I had a lot of ectopics) I decided to come off it and eventually went into Atrial Flutter (age 69).

I had another ablation 2 weeks ago to stop the fast rhythms, but, and I know it's early days thus far, I have been left with a high ectopics burden, 1000 to 1500 per hour in the day, 200 to 400 per hour at night. I'm back on 100 mg/day Flecainide with the option to go to 200, plus am starting Diltiazem in a couple of days, to limit what the EP said was the "paradoxical" effect of Flecainide which needed something to slow down the conduction from top to bottom of the heart. (I don't really understand this.) In my recent ablation the EP found my ectopics were coming from just below my aortic valve and were inaccessible for ablation due to my mechanical aortic valve. :(

So in the end a sort of equivalent position to you. As far as I know, there's no problem with Flecainide as a long term medication - I did 15 years before my AD, and will now be on it for life.

The only other tips I can give are: learn to deepen and slow your breathing, as a minimum when you're able to do this sitting, then as much as possible during the day. Get your potassium checked: the normal range is 3.5 to 5.3, but there is good evidence that being in the upper half of this range helps to quell arrhythmias. Often, if you're 3.8, say, doctors will just say that's normal and not be concerned. But several meds will deplete potassium, and adults need around 5 grams per day. I had success with this at one point, but it takes weeks to take effect. Be careful with high dosage supplements as high potassium can be dangerous - always get levels checked - but don't waste money on low-content potassium (100 mg is a common offering). Check a list of foods and their potassium content and tot up what you're getting. Some people swear by magnesium supplements to help reduce ectopics. And finally, try and direct your attention to something else when you're feeling the ectopics, there is quite an awareness component to ectopics.

Best wishes

Cliff

John3333333 profile image
John3333333 in reply toCliff_G

Thank you for such a thoughtful response. I am glad to hear that long-term flecainide use has not caused any issues for you. I already take a daily magnesium supplement but have yet to take any steps to see if I need to increase (or decrease, I guess) my potassium intake. I feel that your response will now push me to investigate this further.

ETHEL103 profile image
ETHEL103 in reply toJohn3333333

May I add here I take Losarton Potasium for BP and I suffer from ectopic, which cause me anxiety.Ive often wondered if they are causing the extra and missed beats ,I'm sure my gp would not be interested what I thought.

Cookie24 profile image
Cookie24 in reply toETHEL103

I take Losartan and doctor told me to stop taking Potassium supplements.

Cliff_G profile image
Cliff_G in reply toCookie24

Losartan and others (e.g. Spironolactone & Epleronone) increase your potassium levels. They did with me too, but my levels were still relatively low and I had room to supplement. This is why I say get your levels checked.

Cabinessence profile image
Cabinessence in reply toCliff_G

MY God Cliff, that's an ectopic beat once every 3 or 4 seconds? Was that a typo you made?

Cliff_G profile image
Cliff_G in reply toCabinessence

No, not a typo. Just did this week's 24 hr monitor. Same number!

Cabinessence profile image
Cabinessence in reply toCliff_G

I don't have one an hour and complain! I always associate them with going into an AFib episode and get this split second freeze where's my heart's in mouth mouth wondering whether it's going to trip into an AFib episode or not. I feel for you Cliff. I thought ablations could target Ectopics? I'm sure my EP said that when she did mine 15 months ago. And counting........

Cliff_G profile image
Cliff_G in reply toCabinessence

Yes, you can ablate ectopic sites, but not if they are directly below the aortic valve and you have a metal aortic valve as I do. Access to the L ventricle is usually via the femoral artery and aorta.

I've found widely spaced ectopics are worse than frequent, at night. I used to get them, going off to sleep, 10 minutes of falling off to sleep, rudely interrupted by an ectopic. .... oh, another...! And by the 3rd or 4th you're wide awake.

The frequency I'm getting them is worse in the day, more breathless, but better at night as they're not so intrusive, plus they calm down to about 300 /hr

Yes, if they trigger AF, not so good.

secondtry profile image
secondtry

Somebody here has been on Flecainide for 30+ yrs. I have been on it for 11 yrs at 200mgs.

For ectopics somebody here mention recently D-Ribose tea, maybe worth a try after doing your own due diligence into side effects etc.

John3333333 profile image
John3333333 in reply tosecondtry

That is very reassuring.

kkatz profile image
kkatz

Although my case is different I do sympathise with you.I had an ablation 20 months ago and did go through increasing ectopics earlier this year and was told the treatment of ectopics can be worse than the ectopics.However I did a spreadsheet of my ectopics and the increase in frequency & told them how much it was affecting my Qol.After discussions my Diliatizim was stopped.After a very short time they stopped.Also I had my post op consultation after op for giant hiatus hernia and surgeon showed me post of CT scan.stomach was in chest putting pressure on heart & lungs and could definitely affect the way my heart was functioning.

If hope any of my story can be useful.

Browncoat profile image
Browncoat

Hi John,

I had an ablation in early 2021 (in my mid-50s) following increasingly common and symptomatic paroxysmal atrial fibrillation... most common at night or when relaxing (vagal?). I was using Flecainide 'pill-in-pocket'.

Following the ablation I was on no medication and had NO atrial fibrillation at all, but did start getting some erratic ventricular activity after a few months that was slightly disturbing. My specialist started me on a low regular dose of Flecainide and very low Bisoprolol... which has kept things perfect so far. Like you, it appears that I will be taking the Flecainide for the rest of my days.

So, even after an ablation you may still need Flecainide.

As a side-note, I was for several years, and still am, taking magnesium.

Cheers,

Stephen

Spoiler profile image
Spoiler

John,

I was on flecainide on various doses for 7 years, ranging from 100 to 300 daily. According to my local EP Dr saying the heart remodels, dosages were reduced due to the higher doses increased abnormal rhythms? None the less, after my 3rd ablation (second opinion Dr) at the Cleveland Clinic in Ohio, the #1 heart center in the US, I only take Eliquis and metoprolol 25 mg twice daily. That ablation was April 28th of 2023. Since then my life has changed, zero afib on my pacemaker reports. I am 69, maybe get a second opinion on a ablation, I did… peace of mind maybe.

The flecainide did not seem to affect me health wise as far as I know though.

Sally_Scott profile image
Sally_Scott

hi John. I’m 76 and developed AF aged 69. Had various ablations, cardioversions. 2 and 1/2 years ago I had OHS at St Thomas’s for 2 new valves. I came out of surgery in Afib but obviously couldn’t be cardioverted due to not being on Apixaban solidly for 1 month. Waited till the month and went into my local hospital. I am on flecanide 100 mg twice a day. Tbh it keeps my Afib at bay. I did drop one dose a year ago for about 3 months but then back into permanent Afib so now back on it and 🤞 ok. I’m allergic to bisopropil.

drdubb profile image
drdubb

I take flecainide for ectopics. They usually occur in the evening. My Dr. recommends regular stress tests b/c of research on the long term effects of Flecainide. I find that caffeine/chocolate are triggers. I take magnesium regularly with prescribed potassium. I've had two ablations for AFIB. The last one was in 2020. I was off flecainide for about 18 months, but it was restarted with the ectopics.

execz1 profile image
execz1

I am sorry to hear about your troubling Bigeminy and the need to be on anti arrhythmic medication. You asked about my experience with Flecainide.

First, I have had ectopic beats for at least 40years that progressed to AFIB 12 years ago. My afib is symptomatic therefore I am taking an anti arrhythmic drug, Multaq, for the last five years. I tried to replace it with Flecainide for about two weeks, but the medication worsened my afib episode by causing heart pauses . So for me It didn’t work at all. Please note, however, that it seems that many people do very well with it including an 83 year old friend of mine that have use it for a year with no episodes since she was newly diagnosed with afib a year ago.

By the way, I am 82 with symptomatic afib and refused ablation for it’s low success rates at my age . It appears that overall ablation rarely is total success.

Good luck with your treatment.

BigDunc profile image
BigDunc

Hi John

My AF started in my late 40’s and after it was established I had no coronary artery disease I began taking Flecainide 50mg twice a day and it only became effective when I was put on 100mg. I had no problems with Flecainide it kept me in sinus rhythm for around 15 years.

I began getting some ectopics and further investigation revealed I had mild coronary artery disease and a long QT interval and was taken of Flecainide. Within 2 months I began getting regular AF every few weeks proceeded by bygemny and Trygemny ectopic s horrible feelings those ectopics glad to go in AF. Ablations I’ve had 2 never worked for me:

I went on a drug called Disopyromide 2 years ago and been AF and ectopics free. Also square breathing can really help with ectopics don’t worry about Flecainide it’s a wonder drugs hope this helps

MikeThePike profile image
MikeThePike in reply toBigDunc

"don’t worry about Flecainide it’s a wonder drugs" Really? Then what caused "a long QT interval"?

BigDunc profile image
BigDunc in reply toMikeThePike

No idea what caused long QT I’m not an EP and you’ve got to have trust in your medical team, When I first started with AF some 20 years ago it was A&E every time you went into it, Flecainide gave me the quality off life I was used to and kept me virtually AF free for 15 years. I still worked in the prison service went on holidays abroad had a few beers within reason and lived a normal life with very few side effects. So yes Flecainide was a wonder drug for me as is Disopyromide now albeit with a few more side effects,

Ppiman profile image
Ppiman

I can relate to this, and my ectopics did eventually "turn into" AF.

My ablation in 2019 was for atrial flutter - a right-sided arrhythmia issue. My ectopics seem to be left-sided and, in my view, are just a "kind" of AF. The heart cells likely don't know their left from their right, anyway (I used to struggle with this when I was young!). When I look at my ectopic beats (single, bigeminy / trigeminy, etc.) on my ECG traces from, say, my Apple Watch, then when I look at my AF ECG traces. the only difference is that the trigeminy or whatever seems to have "joined upon with itself" and "become" AF.

Will yours go that way? Possibly, It truly depends on what the ablation has managed to achieve. For AF (or flutter) to exist there is an atrial feedback happening that self-propagates in a kind of "circular" arrhythmia. With luck, your ablation has stopped this happening, so the ectopic beats can never "join up" in the way mine do. Of course - it's not much "luck" since ectopics beats, to us both, I guess, feel perhaps even worse than AF!

Those who see ectopic beats and palpitations as somehow "not so bad", as it were, because they are "benign" in comparison to AF, perhaps miss the point: AF is only "not benign" because it can cause thrombi to form, whereas ectopics do not. This seems to me possibly because the continuous nature of AF likely causes the blood in the small left atrial appendage (LAD) to pool more than ectopics do and thus, to form clots. In all other ways, persistent ectopics is very similar to AF, in my experience, and, indeed, can feel worse.

Steve

John3333333 profile image
John3333333 in reply toPpiman

Like you, I do find bigeminy more disruptive than AF. However, unlike AF, all I need to do to stop the bigeminy is simply lie down.

mikelocke profile image
mikelocke

l’ve been on flecainide for nineteen years. Atrial flutter started to become a problem so had an ablation that fixed it. After some time various ectopics became a nuisance so added bisoprolol to my flecainide and now permanent NSR. So flecainide can be your friend for a long time. I’m now 81 and still enjoying life 😊

BigDunc profile image
BigDunc in reply tomikelocke

Great to hear Mike

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