I love this forum, even though our health systems are different I always find I learn so much from all of you.
I am here looking to see if anyone has had a similar experience on Flecanide. Some background first. I was diagnosed with AFib in my late 40s. I am now about to turn 65, have had two ablations - last one was about 11 years ago. I was once on Rythmol but then was switched to Flecanide ( 100 mg twice a day and 2.5 mg of Bisoprolol along with Eliquis.) As much as I had some of the side effects that come with Flecanide such as being winded and a bit fatigued I felt it that it worked for me. My ablations did not make me AFib free and I was in AFib a bit and had to occasionally go to the ER to be cardioconverted prior to the Flecanide being prescribed. Once on Flecanide I could take up to 100 mg more when in AFib which converted me. My episodes were maybe 2 a year. This routine worked for over 6 years.
While using Flecanide my resting heart rate was between 55-60 bpm. Recently my resting HR dropped to about 47 and then one day when I was at work I felt really unwell and checked my HR to discover it at 30 bpm. Called my cardiologist who immediately told me to get to the ER. The ER doctors and nurses took it very seriously and had me hooked up and on a drip in moments upon arrival. The ER cardiologist started talking about a Pacemaker which put my head in a spin as I know that day may come but I was hoping not yet. She said I would still have to be on AFib meds though. Anyway it was decided between the ER cardio and my own cardio that my body was now reacting to the dose of Flecanide (too much) and they dropped my dose to 75 mg twice a day and one 1.25 Bisoprolol. She warned that more episodes of AFib would probably result but my resting HR would be at a safer level.
Since this change I have had weekly AFib episodes with HRs in the 115-130. When on the higher dose of Flec and Bis any AFib episodes would remain in the 75-90s. I have been instructed to increase the Flec a bit during these episodes and have converted within 6-9 hours.
What I have noticed and what is of concern to me is that the AFib flips to Atrial Flutter after about hour 6 and remains at constant high heart rate until conversion. Until this med change I have not ever had Flutter which is worrying me. Did some investigation and found out that a switch from AFib to Flutter can occur when using Flecanide. My cardio does an Echo on me every 6 months and the one in the beginning of November showed my heart structure to be sound.
So after this long winded bio I have a few questions.
Has anyone had the experience of AFib switching to Flutter on any med?
Has anyone had a similar experience on Flecanide?
Has anyone had a Pacemaker put in and how did it change your life?
Anyone had a Cyro ablation after a catheter ablation- did it help?
Thanks to all who have read this epic post to the end. The one good thing is my amazing Cardiologist squeezed me in on Monday morning when I called his office today (Saturday) so I am hoping for some answers. Perhaps it is time to revisit my Electrophysiologist .
Thanks again
Pam
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PamH75
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I can’t comment through experience as I’m yet to get a pacemaker but it is in my future. My bradycardia is ok at the moment - average of 62 during the day and 51 at night, and the meds are working well - no AF or tachy for at least 12 months. I would go with the pacemaker.
As I understand I will get to the same point - either due to brady or my arrhythmias. I’ve read glowing reports mostly about pacemakers mad how good people feel when they get them, my own brother included.
On a side note - as an Aussie we feel an infinity to Canada due to the similarities between our countries. I’m about to lose my eldest daughter to your country. She’s moving there to take up a position as a senior paramedic. She loves her career and wants to build on her experiences.
Thanks for the reply. Your comments make me a bit less terrified of a pacemaker. I kept thinking I was too young but have spoken to some who had one put in when they were younger and they feel it changed their lives for the better.
Where in Canada is your daughter relocating to ? My friend's daughter just moved to Sydney and has a position there as a nurse. She visited Australia last summer and decided it was her forever home.
She’s moving to Saskatoon (not sure if that’s how it is spelt). I can’t pronounce half of the names she says. 😆 Sydney is a lovely city - too busy for me these days. I live in a small coastal community about 1.5-2hrs south of Sydney.
Has anyone had the experience of AFib switching to Flutter on any med? Yes.
Has anyone had a similar experience on Flecanide? I took Flec as a PIP for a few years when it worked well, then daily for about 18 months until it stopped working for me. Then 2 ablations, the 2nd of which I took Flec again during the blanking period but I developed long QT and it exacerbated an autoimmune condition so had to stop unexpectedly.
Has anyone had a Pacemaker put in and how did it change your life? Yes - excellent, stopped most of my AF and improved QOL 100%.
Anyone had a Cyro ablation after a catheter ablation- did it help? Never had cryo, both my ablations were 10 years ago and RF, cryo was only just coming available and I had co-joined pulmonary vein so wouldn’t have been a suitable candidate.
Thanks for responding about your Flecanide experience. I am beginning to wonder if this is the end of my journey on Flecanide but some people have commented in other posts that the lesser dose was what they needed as my recent ails seem to align with Flecanide overdose. Hoping that I can figure this all out as I am very symptomatic when in AFIB. Glad to hear that your Pacemaker has worked out so well. If I end up there I hope that I have the same experience.
Flecainide 200mgs worked for me for 10 yrs but in the last year have experienced a variety of flutter/other arrythmia/pauses. Considering all options now.
Medics not very willing to discuss further just listing me for the standard established ablation. Pacemaker may be something to look into.
Do you think it is possible that your body/heart has improved over the years to where you do NOT need so much Flecainide and your present problem is a result of "overdosing"? Thanks.
Yes, I'm sure he will. Perhaps he has to. But I know that you have mentioned that for the last ten years or so you have made a concentrated effort to improve your mind and body and spirit. So I'm sure that all of that has genuinely improved.
1. Has anyone had the experience of AFib switching to Flutter on any med?
Yes - me. It's not uncommon.
2. Has anyone had a similar experience on Flecanide?
Same answer as number one.
3. Has anyone had a Pacemaker put in and how did it change your life?
I haven't but CD has covered this in her post.
4. Anyone had a Cyro ablation after a catheter ablation- did it help?
I haven't. As we are all different results may differ. I'm sure other forum members who have had both will answer this question.
30 bpm is far too low. I'll do a thread about a watch that checks your HR 24/7 if I have time today. It's very accurate and only costs 20 quid. I bought mine from the local supermarket but you can buy them online. I wouldn't buy on eBay, though, as many will likely be copies. You can set the watch to alert you when your HR hits either too high or too low. You select the BPM you want. I selected below 50 bpm and over 100 bpm.
Thanks for the reply Paul. Good to know that flutter isn't that unusual for others as it is new for me. Perhaps the lower med dose is allowing things to creep in that were blocked with the higher dose. I will look into the watch. My resting heart rate is usually above 55 and so far the 30 was a one off. Hoping it remains like this. I watch like the one you speak of would help give me peace of mind.
Pam, I have had AF of sorts for about 12 years , I was prescribed some beta blocker which sent me crazy, I was then give Flecanide 50 mg twice a day , but id di not like taking tablets so stopped , I realised what caused my AF and control it mainly very well , I have occasional episodes which used to last 12 - 20 hours, then suddenly they increased to 3 a week so ended uo with cardiologist , he went through all tests etc , I have wrote another piece here about what other stuff I take which has helped enormously , but he suggested that on having an episode of AF to within one hour take 200 mg and then another 100mg if it had not returned to normal within another 1 hour and I have done this maybe 3 times in 10 months and each time it has worked with 2 / 4 hours , so this works for me . I asked abut a pacemaker but was told this is only for persons with low heart rate , mine usually goes higher but nt too high about 90 .anyway good luck god bless x
Hey Pam, also Canuck here. Sound like they chose a sodium blocker for your AFib. Mine initially put me on a beta blocker (Metoprolol) but it immediately left me winded with the slightest effort. I went back after the mandatory 3 day “adjustment” period, and they apologized for putting me on beta blockers and immediately switched me to calcium blockers and et voila, instant reset to normal. It’s like I’m not on any drug, and besides a few food induced episodes (all were less than 24hrs and all but 1 resolved on its own) I have been right as rain.
I’m no doctor, but a doctor DID prescribe me the wrong drug out of the gate, so maybe you could revisit that with your Cardio?
Bisoprolol is a beta-blocker. I was initially put on Metoprolol years ago and it was horrible. I will chat with my Cardio about potentially trying a sodium blocker.
Yes, I've experienced the flip side of Flecainide. I still take it and am grateful for it as it has worked well to cut my Afib episodes - frequency and duration.
To cut a long story short...
Smaller split dose works well for me (25mg midday, 50mg bedtime). That gives me most protection at night, which is when Afib usually happens (I don't have sleep Aponea).
I take Bisoprolol 1.25 at midday too and half of that at bedtime. That's enough.
The bisoprolol is the rate drug of course. I often see posts here from people who take much more than I do (and I'm a fairy large, active guy).
I had a very low heart rate (to high 30s) when things 'got out of synch'. I'm fine now in that regard.
(I think what's helped me most in past year is very actively keeping my blood sugar levels stable. This has surprised me. I'm not diabetic nor near it. I've lost weight and that's helped too. I think too if we eat carefully, we need lower drug doses?)
I take apixaban / Elquis now but that doesn't seem to have any effect or side effects.
I have had a pacemaker and although still on eliquis apixaban, 1.25 bisoprolol I have been told that as I am now in permanent afib I can stop the flecainide. They were my miracle drug until they weren’t!! I had no side effects from them the EP said might as well stop the flecainide as why take a tablet that is no longer working I haven’t quite had the courage to stop but I am going to
Although still have afib the pacemaker is brilliant in that I no longer (or rarely) notice my heart
I have been taking it since my first ablation wasn’t a success which would have been about 2017. I thought it was 2016 but that was when I had my brain tumour surgery so not then
I don’t know why it stopped working although as far as I’m concerned I didn’t think it had until I was told I had permanent afib and no point keeping taking it
As i think I said before I did stop it but I felt not so good so went back on it. Many people on here say it “could” cause other arrhythmia, but I don’t know. My EP has never said that. All I do know is that I found it my miracle drug but now I’ve had the pacemaker I will give a try at stopping it again
I know it’s a rhythm control drug and bisoprolol is a rate control
I took flecainide off and on 7 years, anywhere from 50 mg twice a day to 150mg twice a day. I took the high dose 13 months And fine, then it started to create flutter a couple hours after taking it. Long story shorter, we reduced it and finally stopped yhe drug. For the most part worked well, then, NO. My EP Dr said your heart remodels… changes. I do have a pacemaker, but that is because I had bradycardia before being put on metoprolol, which I have taken 10 years. The dual lead pacemaker has been no problem at all, in fact since it keeps data, it is great! I have had 2 ablations, last one in 2023, no afib since and not on any antiarrhymic. I take only Eliquis and metoprolol. I do get fast atrial rate at times if it is about time for the beta blocker, but I can take my calcium channel blocker “cardizem” low dose 30 mg and it goes away. Other times it might stop on its own in a few minutes, the higher rate 120 or so does not affect me much at all, afib was horrible!!!
Flecainide, yes
Pacemaker, yes
Flutter, yes
Fast atrial rate, yes
Afib after last ablation, NO
It is tricky if too much of the drug is creating it or not enough, trial and error we did in my case and observe closely. My Dr and I just finally figured it out.
Hope this helps and you are well, it can be so frustrating, hang in there!
The only thing different is I have a pacemaker. I take the same dose of flecanide but do not have flutter. Also take 5 mg of bisprolol. I experience breathless and fatigue. They put a pacemaker because the medication made heart rate to low.
No trouble with pacemaker and so far no afib. The two side effects I mentioned.
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