Hi all. I've been poking around the site for about a year with a couple comments and a post or two. I find I'm at a fork in the road with my AF journey and wanted to submit to the group for any perspectives I might not have considered. I'm consuming the wealth of data available here and at the org.
I'm from the U.S., am 53 y.o. and am very active as a cyclist and weight lifter. I'm in excellent health but do have 'Lone' A-fib. I've suffered with PAC's and PVC's (and resulting Anxiety) since 30 years of age. Initially, I was able to suppress premature beats with higher dose Atenolol but am no longer able to tolerate the HR suppression. Metoprolol, Verapamil, and Diltiazem were all either ineffective or caused side effects. EP is recommending Cryo PV Ablation after 3 events over past 17 months. PiP Flecainide has worked within 2 hours each time.
Honestly I'm most impacted by the constant premature contractions at this point. EP says there's a chance those could be eradicated with the AF Ablation but no guarantees. It seems like a big leap with the odds that I'll still have the troubling ectopics (and maybe even more). I also understand outcomes are better if ablating when younger/healthier and with out as much AF burden. Dilemma - Get proactive and ablate (accepting unknowns) or count my blessings and proceed with Flecainide full time (previous trials show decrease but do not completely eradicate ectopics). Any input is welcome.
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Bennera513
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Ectopics are a common side effect of ablation you must understand. Many of us who no longer have AF after various ablations do still have ectopic events of varying nuisance. The slow deep breathing exercise can be most helpful in terminating such events.
You must also know that cryo ablation has severe limitations in what it can ablate and not everyone has perfectly formed pulmonary veins into which to insert the cryo balloon. A subsequent RF ablation may well be needed to try and isolate any remaining rogue impulses and again no guarantee that ectopics will not intrude.
I do wonder if it is your life style causing some of these problems since it is known that competitive cyclists are prime cadidates for AF and no doubt the weight lifting carries similar stresses for the heart.
Thank you Bob. You bring up some good points. From a purely logical view it seems my AF burden does not really 'justify' the risks at this point (at least not yet).....especially given that the Pill in Pocket is actually working very well. Would you think I was off my rocker if I said I seem to get along better with the Afib than with the ectopics? We're talking 20/minute during the worst 'storms' and sometimes Bigeminy. Something about the constancy of the fibrillation that is more calming than the much more unpredictable premature beats.
And you likely nailed it with the exercise. I don't smoke or drink, eat vegan, stepped back the stress at work and prioritize sleep,....but I do crank up the intensity when it's time to play. Though even that has been dialed back considerably. Still 2,000 miles/year on the bike and 4 1.5 hour workouts per week might be considered over doing it, especially if I am not good at resting with just as much enthusiasm. Funny, much of the compulsion to exercise comes from a fear of heart disease which every male member of both sides of my family have succumbed to. Perhaps it's time to dial it back further...
I’m from the UK but I think this is what we can rightly call “the 64 million dollar question”!
You clearly have done a significant amount of research and are now facing the dilemma of do I or don’t I, and as I think you already know, this is a question only you can answer. I’m not sure whether or not your sporting activity falls into the category of “extreme sport” but if it does, then there is a good chance that it has contributed significantly to your arrhythmias. Whatever decision you take, you need to bear in mind that whilst an ablation may free you from AF, if you continue to exercise to extreme levels, overtime the ablation is likely to fail. Therefore you shouldn’t necessarily see it as a route back to extreme exercise. Here in the UK, an ablation is not seen as a cure for AF, but it can be, and often is, a very effective way of controlling AF symptoms but as you say, there can be no guarantees. The alternative is a lifetime of taking very potent medication which can, over time, become less effective and because it’s generally a progressive condition, AF can become persistent/permanent.
I can only speak from my own experience and in 2014 I was diagnosed with lone persistent AF. I had a cardioversion which returned me to normal rhythm for just over a year when I started a daily maintenance dose of Flecainide. My cardiologist at the time was not particularly pro ablation, but when asked the question, he suggested I had a Cryoablation. Because one of my pulmonary veins was irregular, I needed a second RF ablation and have been largely AF free now since my cardioversion. Any episodes I have had since have been much milder than before and quickly stopped using Flecainide as a PiP. I am tempted to have a third, but my situation has improved since having thyroid treatment so will wait a while to see how things pan out.
Others here may express other views and opinions, there are no right or wrongs, all you can do is find an EP who you can have confidence in, be as sure as you can be that he/she is not motivated by making a fast buck (less likely here with our NHS system and follow your instincts......good luck.
You are right. When thinking about a life free of afib and/or ectopics my first thought was I could go 'full bore' with the exercise....'Yipee!. I competed in a bodybuilding show when I was 40 (a real treat for the ego!) and you can imagine the beating my body went through there. And the cycling centuries and constant hunt for personal bests can't have been healthy. Though as I mentioned to Bob, above, I've dialed it way back....at one point not riding for 6 monthsl to test whether I might have introduced some reversible atrial stretching. No such luck.
I appreciate your insights. And you touched on something that also gives me pause. What if there is some, as yet, undiscovered cause of the afib. A certain vitamin or mineral is off but it's not something that the doctors check for. I get an ablation,....am I doomed to never know what that fix might have been? Might I suffer through complications when there was a clearly defined but hidden source for the condition? You mentioning the Thyroid treatment mimics my thoughts on allowing myself more time to do 'research'. I'm afraid I've driven my wife, friends and doctors mad with constant inquisition and trials. As of late, I've been forced to put more energy into dealing with my anxiety levels,....and the cornerstone of that revolves around acceptance.....Accepting what is and living my best life in harmony with 'this'. Proving to be very difficult.
If you are interested in looking into the balance of things in the body, you could look for a Functional Medicine practitioner. Some are also qualified doctors. They look for the root cause of disease and often start by giving you a thorough questionnaire to fill in ( so thorough it goes back to birth!) and also relevant blood tests that are very comprehensive to look at the balance of hormones/ cholesterol/ minerals etc in the body. From this, the functional medicine doctor can suggest areas that need supplementation/ lifestyle changes /food additions to optimise health. There is quite a lot of research coming out to suggest that inflammation in the body can be a trigger. Inflammation can come from the gut biome as well as within the body itself. There is a web site for functional medicine where you can look for registered practitioners.
There is a cardiologist in USA who is also functional medicine doctor. He is known as the Paleo cardiologist and has written a book. I find his take interesting and although I buy into some of it I also believe there is a place for the traditional treatments that are offered to us.
He can be found on Face book/ You Tube too. Have a look around his website and resources. Some are free including some webinars and other stuff is to pay for. I found it useful to dip in and out - use what feels right and ignore other stuff.
Thanks Diddyd for the references. I do have a 'Naturopath'. She also is an acupuncturist and is affiliated with the hospital's integrative medicine department (using acupuncture for Cancer sufferers mostly). I had pretty good luck with the pins. It would fire things up initially but by the next day and usually for a week, things would relax significantly. Of course COVID slowed my roll with that. I also had a more 'holistic' private (paid out of pocket) Doctor but I found his methods too far fetched and unhelpful. There is a gentleman who is known as the Dr. Detective (Dr. Bryan Walsh) and he will consult with you online and analyzes your test results, recommending rabbit holes to explore . I very nearly commissioned him. But I like the looks of the links you provided for functional practitioners.
Hello. I've had 4 ablations. Came down with AFIB around 55. Used Flecainide as pip and at times continually to stave AFIB off. Also had acute Generalized Anxiety Disorder 20 years ago, which I sent into remission through supplements and healthy living (no meds). I see a lot of similarities of where you are to where I was.
In my case .... the AFIB was relentless and got worse very quickly. I was at that 'decision' crossroads. I chose ablation.
There was 10 years of normalcy between my 3rd and recent 4th ablation. My first ablation was in the right Atrium for Atrial Flutter (so maybe don't count that one if you have AFIB).
I'm 67 now. But always active. I was climbing on an exercycle when AFIB first hit. Now, I do resistance band, free weight, and body weight training in my gym. Plus I walk briskly 60+ miles a week.
The trouble with going the Flecainide route for management ... is that over time the medicine (or possibly the arrhythmia, too) negatively remodels the heart, lowering the effectiveness of future ablations, if you want to change course.
I wanted a cure ... and I don't like meds. My cardiologist said Flecainide has some 'nasty' side effects. I didn't even like the taste of it ... caustic! But, it did work taking it a few months end of last year to keep AFIB at bay. I'm off it now ... quit 2 months after ablation in OCT 2020.
I've had ectopic beats. Continuous PVC's after my 3rd ablation. Very uncomfortable. I discovered 300mg Magnesium twice a day smoothed the heart beat out to normal and kept it that way. Give it a try .....
If you decide to go with ablation, I recommend going to the best EP you can find. Everyone is doing them, but there are only a few who are the superstars. We seem to have more options and better choices here in the good ol' USA.
Look up Dr. Steven Hao out of San Francisco ... he did my 2nd and 3rd ablation. Also ... my recent one was performed by Dr. Natale in Thousand Oaks, CA. He is world-class .... one of the best ... a pioneer of the ablation procedure.
Once a month he comes to Thousand Oaks to perform ablations, but he heads up a 14 doctor arrhythmia group in Austin Texas the rest of the time.
Natale and Hao were partners in SF 10 years ago. You can't go wrong with either one. Fly .... drive .... whatever! Just get to a 'world-class' practitioner. Do not cave in to convenience. It's too important.
I had rapid ventricular rate (RVR) with AFIB this time around. Sinus type rhythm at 130 bpm. Something new. They told me the rvr would be gone with the ablation, and it is gone. Perhaps they can smooth out your ectopic PVC's too.
Ablation today is a piece of cake to what I had 10 years ago. It wasn't bad, then .... just much better now. No laying still in recovery bed flat-on-your-back for 10 hours. I was up and walking within 2 or so hours after procedure. No groin puncture wounds that take 2 weeks to heal. They use collagen plugs in the veins now. The wound looks like a freckle ... and was healed a couple of days after the procedure before I flew home. Little tired for a few days ... that was it. At your young age .... you'll breeze through it.
If you go with a pro ... you might get lucky and get a complete cure on 1st ablation. It happens. But, it's also well known that you may need a 2nd ablation to get the job done. No big deal.
Thank you for sharing your wisdom. And I'm glad you've been able to conquer your fears and smooth things out across your AF journey. It helps tremendously hearing the different view points and logic that folks have earned via personal experience. I share some those fears about remodeling. I agree with your thoughts about finding the right person to perform the ablation. And I had just researched Dr. Natale a couple days ago, having heard of him on this forum I think. My EP says his lab performs the most ablations of any other facility in the Pacific Northwest U.S. Though, I'm still digging into success metrics. I trust he has the skills and experience, but, honestly, he's a grumpy son of a gun. Never been real interested in helping me figure out what might be causing the madness. And responds with single sentences to my myriad questions. But, I understand he is a busy man and is involved in so many more 'life threatening' scenarios. To him, my ailments must be nothing much to worry about. However, a large positive for me is that he's been on the 7 year journey from palpitations that got worse to the afib and all the medical trials in between. Still, the idea of getting some second opinions and different takes is appealing. BTW - Magnesium....tried Citrate and Glycinate,...neither does much for my ectopics but I'm not giving up. Going to try Taurate next and probably some topical preparations. Thanks again and congrats on working things out.
My view is ablation is there when you know there is no other option; you are still talking about other options so that rules out ablation for now. I think there is a case for a maintenance dose of Flecainide for 5 years to see if things improve. Meanwhile continue your excellent research focussing on lifestyle - exercise and diet. There is of course a case for an early ablation with a chance of a substantial improvement but I think this is outweighed by possible complications, still having to take the pills and the benefit of improved invasive procedures in the future.
Yes, I think you are right. At this stage it seems the most practical approach. It helps to know I can pull the trigger if things head the wrong direction (but before they become irreversible - fine line I know), but without deciding to go the medical route long term, I can at least take more measured steps as long as PiP is not too often and it continues to knock out the AF within a couple hours. Thanks for sharing your ideas.
In the UK I expect some people offered an ablation and in two minds get in the queue for an ablation so there is less delay should things unexpectedly turn worse. When called for the procedure if they are fine, they postpone/cancel. Maybe not be possible over there.
My situation is VERY similar to yours...but I've had afib since my early 30's, (hereditary). Flecainide has worked perfectly for me, and now I'm on a very small dose, almost no pac's or pvc's at all, life is good. So you could try it, and it could work for years, and then ablate if/when necessary. Techniques are improving constantly also, so better to ablate later...IF your heart allows it!
Interestingly, I originally trialed Flecainide as a last ditch way to try to suppress the ectopics. I provided some relief at the highest dose but not enough to justify being on it full time, just for that. However, a year later when AF struck, I already had the Flecainide PiP and man was that nice to convert on my own before they could even see me in the ER, but after I'd laid down an AF ECG strip. If the Flecainide knocked out the ectopics as well for me then perhaps my choices would be easier. Ablation a few years down the road with Flecainide as PiP for ectopics....Thanks for sharing.
My EP is fairly aggressive with regards to starting/stopping meds, perhaps because I currently have no underlying conditions. The Flecainide was stopped cold turkey from 150mg/day after 2 weeks. I had no ill effects or side effects or rebounds. At that point I had not experienced AF, however, so there wasn't concern for that.
At another point in time I was also advised to stop Atenolol 50 mg/day cold turkey after 15 years,....in favor of low dose Verapamil for ectopics (which did nothing for me by the way). Never mind the withdrawal led to a 25-30 point HR increase while cycling. Apparently he felt my physiology was strong and healthy enough to deal with it (if only my anxious mind didn't get entangled). Indeed I felt so much better that I welcomed the uptick in HR and saw how it improved my exercise tolerance so I embraced it. Since then I've been on again/off again with Atenolol many times with tapers lasting 6 months. Now that I'm prone to AF I do not welcome quick bursts of HR or pressure so I get anxious when weaning.
Good luck with your reduction. I think modest small reductions over time are the best. Too many variables to account for otherwise and it seems any negative effects are minimized. I presume you are trying to reverse titrate out that dosage that is minimal but still works to keep AF at bay? Anecdotally I remember one gentleman here proclaiming that 50mg/2x day worked better for preventing AF than higher dosages even.
Thanks Ben good to know. It just seems logical to me after 6+ yrs of 200mgs Flec per day you pay your body some respect and reduce the dosage slowly. During Covid no chance of doing this, post Covid I will have to try at least to 150mgs.
Dr Mandrola is a electro physiologist (Rythmn Doctor). He’s in Louisville Ky and an avid cyclist. He has a blog about living with Afib and in fact developed Afib himself. I had 3 very long. 8 hours plus each. Two just created a flutters. None worked. I found no relief with flecanide. I have had chronic Afib since March of 2004. My heart still stops to try to send itself back into sinus rythmn. I’m on my second pacemaker which ensures that when my heart stops it restarts. Haven’t been able to doo much exercise without joint/ muscle pain. Even walking. I swam 3 miles per day before this happened. Not a lot of exercise since and when the flutter and Afib form a perfect storm, I doze almost all day. Good luck. I’ve been told by doctors that the ablation done currently are better and more effective. Talk to your doctor and make sure you understand his success rate.
Yes, I'm very familiar with Dr. Mandrola. I read the 'Haywire Heart' and it about scared me to death. As he says,....He doesn't know how much exercise is too much but he knows it when he sees it. I think I know it too. Some guys in my local cycling club log well over 10,000 very fast and uphill miles each year.....and as far as I know their hearts never even blip. Good for them!
Sorry to hear about your luck with the 'solutions'. And, the limitations on exercise. I hope things will work out so that you can return to swimming and/or walking. I've heard the same from a recent study that says the earlier the better in terms of ablation succes/outcomes. I'm still on the hunt for those success metrics. Seems to be a closely guarded 'secret'.
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Pace and Ablate 
Ablation Fear, to ablate or medicacte
Is it better to put up with ectopics ( around 1% burden) or take a daily dose of Flecainide to (almost) eliminate them?
To ablate, or not to ablate, that is the question....
A bit of a Quandary 
