I saw my EP last week and told him I have not had a single AF episode since starting the meds over 4 months ago. I am taking Flecainide (50mg) and Diltiazem (60mg) twice a day without any side effects whatsoever.
I put to him that I wanted to go off the meds as an experiment to record for any changes compared to the 6 months of AF data I have pre meds. He suggested that I stay on the meds...
Before taking meds I was experiencing about 20 to 30 short episodes of AF at night while in bed, some lasted a few minutes and some were for only seconds over an 8 hour period.
Classic Vagal AF, most episodes resolved themselves while I was asleep. Any episode I could not stop with a Vagal Maneuver I would take 100mg of Flecainide.
In addition to the AF I also experienced up to 700 PAC's and 300 PVC's each night.
With the twice daily meds I have been in NSR for over 4 months... I went from nightly monitoring to weekly and now monthly monitoring, I feel as if I have never had AF!
One thing my EP did state was that the average person with AF who takes meds will have breakthrough AF after about 1 year after being on meds. I would be interested in people's views on this.
He has suggested that I proceed with a Cryoablation, I am booked in for 6 months from now.
His rational was that an AF sufferer should have an ablation as part of the management of AF, not to rely on meds solely.
Keen to hear peoples thoughts, I am quite happy to have an Ablation.
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OzRob
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I agree with your EP but I’m not medically trained and he is. Flecainide is a very effective rhythm drug but over time, it can become less effective and often doses need to be increased. It’s also a strong drug which can only be prescribed by specialists as opposed to GP’s so if I were you, I would follow your EP’s advice. It worked for me, but of course, we are all different………
I’ve had two, last being in 2018. I opted to stay on a low dose of Diltiazem due to borderline high blood pressure. I am not aware of any side effects. I also take Apixaban……..
I agree with your EP. AF is almost always a progresssive condition by its very nature . Whilst drugs like flecainide can't loose efficacy, (there are no receptors in the body as in the case of narcotics) the rogue pathways do become stronger and more established making AF more likely. I had three ablations over a four year period and no AF since 2008 but I did develop a different arrhythmia subsequently. If you are made that way it can happen. Still the best thing I ever did.
I have heard this and certainly some people heal quicker & more efficiently than others so you need to think of ablation as a series of treatments rather than a one off ‘cure’.
Went in with atrial tachycardia at 140 bpm. They zapped me and my heart stopped for 4 minutes in a state known as PEA --Pulseless Electrical Activity when the ECG shows normal but the heart muscles are not responding. This is quite rare, maybe one in five million but typical for me to have it. CPR and several broken ribs later plus adrenaline straight into the heart and I came back from la la land to a new land of pain.
My GP said how traumatic it must have been but as I said I wasn't there at the time and it was somebody else's OH SH*T! moment. Took about three months for the ribs to heal but history now.
I experienced breakthrough AF after being on daily Flec for about 18 months so my experience mirrors what your EP has told you.
Every treatment is a personal choice however treatments. should be a dialogue between patient- who is the expert on their own body & their doctor who is the expert on the condition. Just my view which has worked for me.
Your ep has some good points. I think you have some better questions and reservations.
I'll start with your ablation date six months for now. I either cancel it outright now, or keep the date as a backup. But unless things got significantly worse, I don't think ablation in the next six months is in your best interest.
The Flecainide is 100% working for you. No episodes. And you feel like you never had afib! How much better could it be than that! Yes, Flecainide can stop working, but nothing anecdotally or in the literature to say that you won't have at least a few good years on it.
Do you want to be on Flecainide forever? Some don't mind, but personally I wouldn't want to be. But the beauty of what is going on with you now is that Flecainide is going to buy you time.
It can buy you time in two ways. First, if applicable, it will give you time to tune-up/optimize your body so that an eventual ablation will be more successful. That might involve getting to a proper weight with blood pressure, blood sugar and cholesterol control. It might involve an optimized exercise program. And in your case, perhaps optimized sleep.
Have you ever had a sleep study? If not, your night time runs of afib suggest you should. In fact, if sleep apnea is causing these runs, then treating the apneas may be all you need for your afib!
But let's say, you've already done everything you can (or want) to do with your body. Your body is "ablation" ready Do you really want a Cryo Ablation (or RF) when something better and significantly safer is just down the road. I'm talking about Pulse Field Ablation (PFA).
Take some time to read about the aftermath of ablations and the risks. PFA use nonthermal energy so the ablation can be performed not only quicker but less damage to surrounding tissues. For example, read about Phrenic nerve injuries after ablation. Debilitating damage is rare but it happens. Phrenic palsy lasting months or more is not so rare. Or read about current technologies sometime creating additional arrythmia's because of the scarring. PFA takes that all off the table. And that's why the ep's I've spoke to are so excited about it. If I was a little younger and tolerated Flecainide as well as you seem to, I would wait.
So holding off the ablation serves two purposes. Buys time to optimize the body for a better outcome. Buys time to wait till a better type of ablation is offered to you.
The risk of course is that your Flecainide could stop working any time during the next year or so and the afib comes roaring back. Probably unlikely in that short time frame, but possible.
So what about first stopping the Flecainide an seeing how you do off of it? Great idea, because I thought of that for myself After all, since I started Flecainide 50 mg bid (twice a day) I also was afib free. So I talked to my ep. He said a number of his patients had tried it but most failed. Ok. fair enough, I'll try it! And I failed lol. Even got down to 25mg bid but didn't hold. So back to 50mg bid where, like with yourself, afib can't touch me.
Reflecting back, maybe if I had changed something else other than just stopping the Flecainide, I might have been able to stop. Like losing another ten pounds, like working on my bp a little more, like...like..like... So, yes, if you have some factors that need changing -- perhaps sleep apnea? -- then maybe change those first before trying to come off completely. Or, if you just can't wait like me, just do it and maybe you will be one of the lucky ones.
But again, I think the important thing with the Flecainide is that not only are you doing so well on it but it will buy you time. Buy you time to optimize your body and/or wait for a better and safer afib technology, PFA.
Your ep is just telling you what ep's tell patients. That's his job. Those are his current guidelines. Cryo is probably all he offers. Fortunately, you have done some homework and understand that it's your decision, not the ep's. A lot of people forget that.
I would do the ablation. It's like a free roll of the dice, you have a good chance of it succeeding and being able to stop the flecainide, but even if it fails and you remain reliant on flecainide, you are still in good shape.
I have breakthrough episodes about every 4 months. The blighter gets me every time! My EP says the meds are keeping it at bay most of the time. He explains it light starting a car - when it doesn't work it keeps trying every time you turn the key, sometimes it just starts....the meds stop it starting if that make sense, hence some of the ectopics as it tries. I would stick to get meds, afib will be lurking in the background ready to pounce when you least expect it.
I echo some of what Jim says above in his well reasoned and comprehensive reply. If your AF is fully controlled with meds and you are not troubled by side effects, there is no need to rush into an ablation. You could keep the ablation date as a backup in case things worsen in the meantime.
Propafenone worked well for me for about a year, then I started to get breakthrough episodes of AF which increased in frequency over the second year I was taking it. I was offered an ablation two years ago, but I wanted to give medication a good try first. When medication failed I opted for an ablation.
Pulsed field ablation is becoming more available and seems to be both more effective and less likely to damage other structures than than existing technologies. If you need an ablation a couple of years down the road, you might have the option of having PFA.
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