Seeking advice about Paroxysmal Afib before seeing cardiologist

Posted by otiswinston @otiswinston, Aug 4 9:10am

I am a very active 71 year old Canadian male diagnosed with AFib 2 years ago. I’m on Eliquis, Felcanide and the lowest dose of Bisoprolol. My resting heart rate is 50 and during AFib episodes my rate generally jumps to high 80’s or low 90’s. The episodes usually last a few hours but are fatiguing, especially when I am active. Sometimes I go 2-3 days without an episode but other times they occur daily and last all day. My Kardiamobile records AFib and sometimes Sinus Rhythm with Premature Ventricular Contractions. I have essentially cut out alcohol, chocolate, caffeine and a proton pump inhibitor - it is hard to say if all that helps.
My biggest frustration is that exercise seems to trigger AFib episodes, usually an hour after exercising and as a result I have had to significantly reduced demanding exercise. I have been very active all my life, including multiple long Nepal treks into my 60’s (the last one in Oct 24 was frustratingly unsuccessful when I simply ran out of gas at 3500m above sea level).
I’ve seen mixed views about ablation for someone like me with AFib that comes and goes. Some report they have had this with success; others say doctors won’t take occasional AFib cases as they need to be sure they can do the procedure while you are in AFib. My cardiologist is usually rushed and offers little guidance beyond tweaking meds - his initial statement was that ablation fails 70% of the time. I will see him again in a few weeks and in preparation for that I would welcome views for this forum. I should mention there is very little chance of finding another cardiologist.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

I recommend the afibbers.org site. @gloaming is here and on that site and might chime in.

I had a dramatically different plan when I saw an electrophysiologist versus cardiologist. It sounds like you might have to travel. EP's don't always do ablations. My experience with an EP was kind of a revelation to be honest. Hope you can find one.

I recall that for some, beta blockers aren't a good idea (adrenal vs vagal afib?) but I don't recall the details. Your heart rate doesn't get too high during afib, but I understand you are uncomfortable.

On the afibbers site they discuss the EP inducing afib for an ablation, so in that sense it would not have to be present all the time. Many on that site go to a Dr. Natale for ablation.

I found the book "The Afib Cure" to be helpful, but my afib happens infrequently (though with heart rate close to 200). I take magnesium and drink low sodium V-8 for potassium, eat a little at a time and never eat after 5 or 6. I don't lie on my left side. Etc. We are all different though!

REPLY

Hi, and welcome Canuck AFers Anonymous!
I'll address each of your comments: (BTW, windyshores is no slouch...she's been around the block once or twice and is well-read):

In a way, you are lucky that your fibrillating rate has remained low. My own, and for most others, is upwards of 140, and was at 180 while I was 'strapped in' on the operating table awaiting for my workup angiogram a month before my first ablation (I had to have two, more later...). I do appreciate that you are like a great many of us who are symptomatic, often debilitatingly so. There is a slow erosion of well-being the longer one is in any level of AF, whether paroxysmal, persistent, or permanent.

Alcohol is a wise thing to avoid because it is a toxin, no matter what anyone says, and as a toxin it must be hard on the heart and on enervation and proper electrical function.

Some patients swear that passing their noses over a cup of coffee sets them off. Maybe they're right. However, all the recent research suggests that caffeine is good for the heart, even a diseased heart, in moderation (and herewith is the proverbial fly in the ointment; some people don't understand that caffeine AND OTHER STIMULANTS like it are found in a wide variety of common consummables. They add up! Especially inside of five or six hours because 5 hours is the approximate half-life of caffeine (as it is for your bisoprolol and my metoprolol, BTW). If you have a second cup of coffee or a Mountain Dew five hours apart, you still have about 40-60% of the non-metabolized caffeine from the first coffee, and now you're adding the same amount.

I had my first run of AF at Km 8 of a 10 K maintenance run. It was a typical run, but suddenly something changed and my legs became sluggish and heavy. I sat on the curb and took my pulse, and it wouldn't come down under 130. Long story short, my cardiologist told me I have an irritable heart. He thought it might be due to my history of running races where I was red-lined much of the time. Three months later, an overnight polysomnography showed that it was 'severe' sleep apnea that had made my heart throw in the towel. I hadn't a clue. But, if exercise sets you off, then for now you should probably slow down. I know, it sucks, but the alternative is to make your heart want to enter the 'persistent' phase of AF, which you should want very much to avoid. AF begets AF, and a heart spending a lot of time in it will slowly remodel itself, including enlarging the left atrium. An enlarged left atrium encourages mitral valve prolapse...yet another problem. The gift that keeps on giving. 🙁

Your cardiologist might be speaking about his own success rate, which is about as low as someone certified to carry them out might be allowed. The actual success rate, except for him, apparently, is more like 75%, with a subsequent 'correcting ablation', or touch-up for missed gaps, running about 80%.

The normal process, whether you're paroxysmal or worse, is to perform a simple PVI (pulmonary vein isolation) by drawing a bunch of burn lesions around the ostia of the pulmonary veins where they empty oxygenated blood returning from the lungs into the left atriums' rear wall. The issue is that, for some hearts, the lining of the atrium, the endothelium, migrates into the mouths of those four veins. The endothelium is what propagates the electrical signal from the SA Node nearby. There are no nerves. Just a broadcast charge of voltage that spreads over the endothelium and it causes all the myocytes to contract in sequence as the charge spreads over them. Trouble is, there are two signals. One from the SA, but another that enters the PVs and spreads a second wave emanating from the ostia. This causes chaotic and irregular double-beats of the atrium.

There's a lot more, including the left atrial appendage, the Vein of Marshall, the coronary sinus, and other places that might also be the foci or 're-entrant' points for the unwanted extra signals. It gets complicated. The point is that a 'good' solid EP doesn't need you to be in AF during the ablation. They can 'challenge' your heart using adenosine, isoproterenol, or even good ol' caffeine if they wish. They can apply voltage to the heart and watch for places where the signal travels. This is the 'mapping' process you may have heard about. Or, if they simply can't manage to get the AF to turn up, they'll just do a PVI (pulmonary vein isolation) and see if that takes care of it. You may have to return for another ablation. Happened to me, and my gentleman EP got it all the second time.

If you can get referred to a really busy, very highly regarded, and highly skilled EP, try to get a referral to that person. You want an EP with a good rating, a good rate of success in ablations, and one who performs at least 10 of them each week (they also have rounds, meetings, prep, and meeting both new patients in their offices and discharging others over the phone...they're BUSY! They won't ask you to their next backyard barbeque...they're professional and busy).

The USA, if you have the resources, has some excellent EPs. Dr. Andrea Natale at the Texas Cardiac Arrhythmia Institute in Austin is top-rated, as is Dr. Pasquale Santangeli at Cleveland Clinic.

Finally, and I regret ending on this note, but my ethical code forces me to be square with you: Your cardiologist is going to be a liability to you on the basis of what you have shared. Find another. Travel. Whatever you must do, this person is not going to do right by you. If you feel you deserve a fair shot at overcoming this problem, you will have to be more active and assertive than you have been. In the end, don't expect a skilled physician whose estimate of your success rate is as low as 30% to be the answer to your problems.

REPLY
@gloaming

Hi, and welcome Canuck AFers Anonymous!
I'll address each of your comments: (BTW, windyshores is no slouch...she's been around the block once or twice and is well-read):

In a way, you are lucky that your fibrillating rate has remained low. My own, and for most others, is upwards of 140, and was at 180 while I was 'strapped in' on the operating table awaiting for my workup angiogram a month before my first ablation (I had to have two, more later...). I do appreciate that you are like a great many of us who are symptomatic, often debilitatingly so. There is a slow erosion of well-being the longer one is in any level of AF, whether paroxysmal, persistent, or permanent.

Alcohol is a wise thing to avoid because it is a toxin, no matter what anyone says, and as a toxin it must be hard on the heart and on enervation and proper electrical function.

Some patients swear that passing their noses over a cup of coffee sets them off. Maybe they're right. However, all the recent research suggests that caffeine is good for the heart, even a diseased heart, in moderation (and herewith is the proverbial fly in the ointment; some people don't understand that caffeine AND OTHER STIMULANTS like it are found in a wide variety of common consummables. They add up! Especially inside of five or six hours because 5 hours is the approximate half-life of caffeine (as it is for your bisoprolol and my metoprolol, BTW). If you have a second cup of coffee or a Mountain Dew five hours apart, you still have about 40-60% of the non-metabolized caffeine from the first coffee, and now you're adding the same amount.

I had my first run of AF at Km 8 of a 10 K maintenance run. It was a typical run, but suddenly something changed and my legs became sluggish and heavy. I sat on the curb and took my pulse, and it wouldn't come down under 130. Long story short, my cardiologist told me I have an irritable heart. He thought it might be due to my history of running races where I was red-lined much of the time. Three months later, an overnight polysomnography showed that it was 'severe' sleep apnea that had made my heart throw in the towel. I hadn't a clue. But, if exercise sets you off, then for now you should probably slow down. I know, it sucks, but the alternative is to make your heart want to enter the 'persistent' phase of AF, which you should want very much to avoid. AF begets AF, and a heart spending a lot of time in it will slowly remodel itself, including enlarging the left atrium. An enlarged left atrium encourages mitral valve prolapse...yet another problem. The gift that keeps on giving. 🙁

Your cardiologist might be speaking about his own success rate, which is about as low as someone certified to carry them out might be allowed. The actual success rate, except for him, apparently, is more like 75%, with a subsequent 'correcting ablation', or touch-up for missed gaps, running about 80%.

The normal process, whether you're paroxysmal or worse, is to perform a simple PVI (pulmonary vein isolation) by drawing a bunch of burn lesions around the ostia of the pulmonary veins where they empty oxygenated blood returning from the lungs into the left atriums' rear wall. The issue is that, for some hearts, the lining of the atrium, the endothelium, migrates into the mouths of those four veins. The endothelium is what propagates the electrical signal from the SA Node nearby. There are no nerves. Just a broadcast charge of voltage that spreads over the endothelium and it causes all the myocytes to contract in sequence as the charge spreads over them. Trouble is, there are two signals. One from the SA, but another that enters the PVs and spreads a second wave emanating from the ostia. This causes chaotic and irregular double-beats of the atrium.

There's a lot more, including the left atrial appendage, the Vein of Marshall, the coronary sinus, and other places that might also be the foci or 're-entrant' points for the unwanted extra signals. It gets complicated. The point is that a 'good' solid EP doesn't need you to be in AF during the ablation. They can 'challenge' your heart using adenosine, isoproterenol, or even good ol' caffeine if they wish. They can apply voltage to the heart and watch for places where the signal travels. This is the 'mapping' process you may have heard about. Or, if they simply can't manage to get the AF to turn up, they'll just do a PVI (pulmonary vein isolation) and see if that takes care of it. You may have to return for another ablation. Happened to me, and my gentleman EP got it all the second time.

If you can get referred to a really busy, very highly regarded, and highly skilled EP, try to get a referral to that person. You want an EP with a good rating, a good rate of success in ablations, and one who performs at least 10 of them each week (they also have rounds, meetings, prep, and meeting both new patients in their offices and discharging others over the phone...they're BUSY! They won't ask you to their next backyard barbeque...they're professional and busy).

The USA, if you have the resources, has some excellent EPs. Dr. Andrea Natale at the Texas Cardiac Arrhythmia Institute in Austin is top-rated, as is Dr. Pasquale Santangeli at Cleveland Clinic.

Finally, and I regret ending on this note, but my ethical code forces me to be square with you: Your cardiologist is going to be a liability to you on the basis of what you have shared. Find another. Travel. Whatever you must do, this person is not going to do right by you. If you feel you deserve a fair shot at overcoming this problem, you will have to be more active and assertive than you have been. In the end, don't expect a skilled physician whose estimate of your success rate is as low as 30% to be the answer to your problems.

Jump to this post

What about the watchman procedure

REPLY

You do not have what sounds like occasional Afib. Your description seems to indicate multiple Afib events weekly/monthly some lasting hours and other days. My Afib presents itself with similar symptoms (low HR when in Afib and low resting HR. But my events occur far less often than you. That your HR is staying below 100 bpm is a good thing. I understand feeling lousy as I get wiped out during and after the event. The longer it lasts the more wiped out I feel. You didn't say anything about blood pressure so I hope it is hold good during an Afib event.
You didn't say if your cardiologist is an EP or just a cardiologist. But gathering from his response he is not an EP and if he is an EP he must have a very low success rate at 30%. In either case I think you need a 2nd opinion and it needs to be an EP. There are many good EPs in the US and probably in Canada. But from what I know know about Canadian health care finding a specialist can be time consuming and difficult. If you have the means to travel south then you are a lucky person. I know many men in a prostate cancer group who came south for treatment for specialty treatment. I underwent an ablation for Aflutter which was successful but the EP warned me that Afib was in my future. He brought my HR up to 150 at the end of the Aflutter ablation and I went into Afib. So he was correct and years later in 2019 I had an Afib ablation. BTW Aflutter ablations and Afib ablations are different surgeries so he couldn't go chasing the Afib at the same time he was doing Aflutter ablation. That held good until recently. Oh you do not need to be in Afib to have an ablation. So wherever that came from throw it in the trash. In the past 8 months I have had an increase in Afib events, monthly lasting 18-36 hours. My Kardia device often gives me possible Afib or unclassified. But it is at best a limited device and it cannot tell PACs from Afib. I can look at the reading and see the PACs. I send my reading to my EP through what we call here "my chart". That way I can document it with him. But I can feel Afib the moment it kicks me. I also recently have had an increase in PACs/premature atrial contractions. That is another subject and a bit more difficult to treat. I am not sure what that journey is going to take me. But I can push through exercising with PACs where I cannot do that with Afib. I am not on any heart meds except for eliquis and prefer it that way.
Afib is unhealthy at best and longer times spent in Afib the greater chance of stressing your heart and slowly damaging it.
So I am 76 and recently scheduled for a 2nd Afib ablation Sept 25. Better mapping techniques and surgical techniques have improved the outcomes since 2019. The reason procedures are not always successful is that because they use heat (sometimes cold freezing) they have to be careful so as not to burn the heart or the esophagus hence they may not be able to tame all the spots they would like to. Remember that here we are all lay persons and what you get is a laypersons perspective no matter how well read we are. I am retired from the medical field X 45 years but my specialty (not an MD) was in biomechanics and neurological/orthopedic injuries and how to improve functional outcomes. So the heart is way out my area of training. But I know BS when I hear it and know usually how to find my way around the western medicine. I am fortunate to live within 20 kms of 2 larger university based medical centers and both have good specialized EP heart centers. Yet when I had prostate cancer at age 60 I travelled to Florida some 1000 kms away to a specialty center that only treated prostate cancer. So far that has held up.
BTW my 80 year old brother has managed to control his Afib with medications only. But when he exercises he can push it too Afib. He has been lucky as long term control of Afib is difficult when just using medications. They often fail after a couple of years and he has lasted longer than that.
My best to you.

REPLY
@gloaming

Hi, and welcome Canuck AFers Anonymous!
I'll address each of your comments: (BTW, windyshores is no slouch...she's been around the block once or twice and is well-read):

In a way, you are lucky that your fibrillating rate has remained low. My own, and for most others, is upwards of 140, and was at 180 while I was 'strapped in' on the operating table awaiting for my workup angiogram a month before my first ablation (I had to have two, more later...). I do appreciate that you are like a great many of us who are symptomatic, often debilitatingly so. There is a slow erosion of well-being the longer one is in any level of AF, whether paroxysmal, persistent, or permanent.

Alcohol is a wise thing to avoid because it is a toxin, no matter what anyone says, and as a toxin it must be hard on the heart and on enervation and proper electrical function.

Some patients swear that passing their noses over a cup of coffee sets them off. Maybe they're right. However, all the recent research suggests that caffeine is good for the heart, even a diseased heart, in moderation (and herewith is the proverbial fly in the ointment; some people don't understand that caffeine AND OTHER STIMULANTS like it are found in a wide variety of common consummables. They add up! Especially inside of five or six hours because 5 hours is the approximate half-life of caffeine (as it is for your bisoprolol and my metoprolol, BTW). If you have a second cup of coffee or a Mountain Dew five hours apart, you still have about 40-60% of the non-metabolized caffeine from the first coffee, and now you're adding the same amount.

I had my first run of AF at Km 8 of a 10 K maintenance run. It was a typical run, but suddenly something changed and my legs became sluggish and heavy. I sat on the curb and took my pulse, and it wouldn't come down under 130. Long story short, my cardiologist told me I have an irritable heart. He thought it might be due to my history of running races where I was red-lined much of the time. Three months later, an overnight polysomnography showed that it was 'severe' sleep apnea that had made my heart throw in the towel. I hadn't a clue. But, if exercise sets you off, then for now you should probably slow down. I know, it sucks, but the alternative is to make your heart want to enter the 'persistent' phase of AF, which you should want very much to avoid. AF begets AF, and a heart spending a lot of time in it will slowly remodel itself, including enlarging the left atrium. An enlarged left atrium encourages mitral valve prolapse...yet another problem. The gift that keeps on giving. 🙁

Your cardiologist might be speaking about his own success rate, which is about as low as someone certified to carry them out might be allowed. The actual success rate, except for him, apparently, is more like 75%, with a subsequent 'correcting ablation', or touch-up for missed gaps, running about 80%.

The normal process, whether you're paroxysmal or worse, is to perform a simple PVI (pulmonary vein isolation) by drawing a bunch of burn lesions around the ostia of the pulmonary veins where they empty oxygenated blood returning from the lungs into the left atriums' rear wall. The issue is that, for some hearts, the lining of the atrium, the endothelium, migrates into the mouths of those four veins. The endothelium is what propagates the electrical signal from the SA Node nearby. There are no nerves. Just a broadcast charge of voltage that spreads over the endothelium and it causes all the myocytes to contract in sequence as the charge spreads over them. Trouble is, there are two signals. One from the SA, but another that enters the PVs and spreads a second wave emanating from the ostia. This causes chaotic and irregular double-beats of the atrium.

There's a lot more, including the left atrial appendage, the Vein of Marshall, the coronary sinus, and other places that might also be the foci or 're-entrant' points for the unwanted extra signals. It gets complicated. The point is that a 'good' solid EP doesn't need you to be in AF during the ablation. They can 'challenge' your heart using adenosine, isoproterenol, or even good ol' caffeine if they wish. They can apply voltage to the heart and watch for places where the signal travels. This is the 'mapping' process you may have heard about. Or, if they simply can't manage to get the AF to turn up, they'll just do a PVI (pulmonary vein isolation) and see if that takes care of it. You may have to return for another ablation. Happened to me, and my gentleman EP got it all the second time.

If you can get referred to a really busy, very highly regarded, and highly skilled EP, try to get a referral to that person. You want an EP with a good rating, a good rate of success in ablations, and one who performs at least 10 of them each week (they also have rounds, meetings, prep, and meeting both new patients in their offices and discharging others over the phone...they're BUSY! They won't ask you to their next backyard barbeque...they're professional and busy).

The USA, if you have the resources, has some excellent EPs. Dr. Andrea Natale at the Texas Cardiac Arrhythmia Institute in Austin is top-rated, as is Dr. Pasquale Santangeli at Cleveland Clinic.

Finally, and I regret ending on this note, but my ethical code forces me to be square with you: Your cardiologist is going to be a liability to you on the basis of what you have shared. Find another. Travel. Whatever you must do, this person is not going to do right by you. If you feel you deserve a fair shot at overcoming this problem, you will have to be more active and assertive than you have been. In the end, don't expect a skilled physician whose estimate of your success rate is as low as 30% to be the answer to your problems.

Jump to this post

Does anyone know about the watchman procedure is it better then ablation and dam drugs

REPLY

The Watchman is not a procedure. It's a mesh that closes off the left atrial appendage by encouraging endothelial growth in it, which ultimately makes a 'brick face' at the opening to the appendage....meaning is gets sealed off, and it precludes the formation of clots, which is THE biggest risk for those with AF.

You want an ablation, ideally before you advance to more intractable forms of AF. The sooner the better, but if there's going to be more diagnostics, like an angiogram and/or MRI. Those come first. and will delay your getting the procedure. So, my counsel is to get in line soon so that you'll have a shot at an ablation within the year, ideally.

REPLY
@carly14

Does anyone know about the watchman procedure is it better then ablation and dam drugs

Jump to this post

Jon Mandrola, a respected electrophysiologist, isn’t a Watcman fan. I’m not sure this link will take you to his opinion on it. If not, search for Mandrola Watchman in a search engine. https://johnmandrola.substack.com/p/the-case-against-watchman-for-stroke

REPLY

Unfortunately the options for closing off the left atrial appendage to prevent clots leading to strokes are very limited at this time. The Watchman is one that is placed through a groin vein inside the heart. The other few options for closing the left atrial appendage like the ArtiClip require an incision between the ribs, cutting the pericardial sac and placement outside the heart.

My vote would be for Dr. Mandrola to become involved in left atrial appendage closure development.

REPLY

Adding a bit more...

Think of cardiologists as plumbers—they are great at fixing blood flow issues. EPs are electricians who fix wiring problems. When meeting with a superior cardiologist, they will immediately recognize what's going on and refer you to an EP of similar standing. So as Gloaming states, do yer research and get thee to the appropriate party asap. The longer you wait, the more this will propagate...

I had the ArtiClip installed while undergoing my convergent/hybrid procedure given they already had access to the heart. I believe Mayo may prefer this to the Watchman, but it also depends on your situation.

REPLY

Hi Otis!
Totally agree with windy shores post.
I am an RN with 40 years of experience, as well as last 20 years of cardiac issues...
Go see a electrophysiologist. If you have to drive 100 miles, get an appt. Your cardiologist should be able to give you a referral...If he does not....you need to get another doctor.
Your post describes someone who should have been offered that option, already.
sometimes you have to be more assertive. Its your body...Never have an ablation without seeing the heart specialist's specialist! CARDIAC ELECTROPHYSIOLOGIST
Thinking of you and wishing all the best.

REPLY
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