Vagal AFib & Beta Blockers, anyone?

I recently discovered information on Vagal AFib, which is intriguing because my episodes fit the patterns I've read about. Late night, lying in bed on my back, having eaten late. A review of FODMAPS showed me some food I thought weren't on the list actually were. So I changed things up, slept on my right side, made dietary tweaks, and the changes have made a huge difference. Relief from the late-night episodes, which typically meant a sleepless night and much of the next day wasted in recovery. All in all, not much fun.

Hoping it will last, we'll see. As my heart continues to heal from my ablation of 8 mos. ago, I want to do all I can to support it. I reached out to my EP to discuss the possibility of me switching off of Toprol. I read that beta blockers aren't supposed to be so great with Vagal AFib. I've experienced the weight gain and blood glucose elevation that can happen though it has kept my heart rate low. I only take 12.5 mg/day. I want to see if maybe Flecainide might be enough fo me.

Wondering if anyone out there has also identified Vagal AFib and has explored going off beta blockers to other medications that can control rate and rhythm. If so, I'm curious to hear about your experience.

My EP is a cool guy; he doesn't practice cookie cutter medicine and, thankfully, listens to me and believes what I tell him about concerns about medications. I knew he needed me to be on Xarelto for my ablation, but after 3 weeks, he let me go back to aspirin. Xarelto has an incredibly strong impact on my entire system, to the extent that it was clearly triggering more episodes than when I wasn't on it. So far, so good.

We'll see what he says about Toprol. I think that part of the trickiness of the heart healing after ablation is that it is literally changing and so the dosages and medications may need to be tweaked. At least for me that's been the case. That's why having a doc who will listen is so important.

Why are you still on an antiarrythimc after an ablation? That sounds like an unsuccessful one, if you require AAR meds. Your Toprol dose is at the minimum. Flecainide invariably goes with the beta blocker due to the flutter risk associated with it. You could ask about propafenone instead, but the better question might be why are you still on an AAR at all?

Betas can worsen vagal AF. They did for me.

Your comment on anticoagulation is alarming. You should have been on Xarelto or Eliquis for the duration of the 3 month blanking period. Aspirin has zero effect in preventing AF related strokes. What is your CHADSVasc score?

I echo wolfpack's comments.

After 8 months your ablation is as effective as it's ever going to be, so if you're still having afib episodes then it was not fully successful.

12.5 mg of metoprolol per day is virtually nothing. Not sure what, if anything, that's doing for you.

I can believe Xarelto may have caused unpleasant side effects, but I'm extremely skeptical that it triggered afib. Why did he not try the other anticoagulants? Aspirin is not effective at preventing strokes in people with afib and I'm frankly astonished he would switch you to it three weeks after an ablation. I hope his malpractice insurance is fully paid. If I were you, I would get back on an anticoagulant ASAP.

Wow, wolfpack, the tone of your comments is really something - and actually, kind of amusing.

You're talking to a complete stranger, a brand new person who just posted on this forum, whose medical situation and history and conversations with multiple doctors you've not been privy to. Yet for some reason you feel it's somehow helpful or appropriate to judge my experience and tell me what to do. And that I guess you somehow know better than me and you also know better than the multiple doctors I'm in consultation with (whom you know nothing about) what I should be doing.

Interesting!!

I wonder if you realize or even care about how poorly that approach lands? How that inherent in it is some version of "What an idiot you are!" Good grief.

Wondering, too, if you are always so lovely to total strangers.

Still seeing what the "culture" of this online community is as someone who's completely new here. I shared in another post to introduce myself. Saw that a fair number of people seemed to have read it. Found it a little odd that no one reached out with any kind of welcome, but OK, whatever.

So then the first comment I receive is wolfpack's. Wow.

Reading from your post: "Betas can worsen vagal AF. They did for me" was helpful. For that I thank you. This is the type of information I'm looking for as I explore options in dealing with this flavor of AFib.

As I shared in my post, I'm eager to learn more about experiences of others specifically related to Vagal Afib, as I'm sure that this is what I have and it's exciting in that I can explore different courses of action.

Nope, I didn't ask folks to second guess every decision, medication, dose, doc conversation, horrible reaction to medication, etc. And for others to pile on with second guessing and judgement to boot.

You seem really sure that you know what I should be doing and apparently that you know my body really well (funny!), but in case you're interested and want to learn something, check this out.

Imagine that for some folks, a very small dose of any medication is actually enough. Imagine that they've researched and tested and discussed it even. Imagine that the folks you're talking to aren't idiots, but have spent loads of time examining the best courses of action to take. Even when that involves challenges like firing a cardiologist and getting a new one who will actually listen. Imagine that the person you're talking to happens to have a system that is by nature extremely sensitive and that the greatest challenge in dealing with AFib has been the sledgehammer approach of overpowering medication. Overpowering to the extent that, yes, the impact and related fatigue actually ends up triggering AFib. With a marked overall improvement once it's stopped. Case in point, Xarelto. Night and day.

Well, guess what? Like I've told doctors, there are those of us who aren't "most people." Imagine holding your tongue, taking a breath and maybe asking a question of someone you've never met to understand their experience rather than launching into sharing your "expertise." You might actually learn something in the process.

The reason I so appreciate my doc of Integrative Medicine is that in Traditional Chinese Medicine, the starting point is that each case is unique. Each person is unique. Treatment for the same condition for 2 different people may be quite different. It's inherent in the approach. It is such a relief to be treated this way!!

And it makes the cookie cutter, sledgehammer approach of many Western med docs and others that much harder to deal with. I take the best of both approaches. There are extremely important elements of each that are helping me to heal from Afib.

Bottom line: with all respect, wolfpack, this total stranger didn't appreciate the tone and approach of your post and I feel it best to tell you that directly. If you have specific experience in dealing with Vagal Afib that you'd like to share, I'd welcome that. I'm not interested in all the second guessing and telling me what to do.

To repeat my request to the forum: If there are others who are sure that they have Vagal Afib, I would appreciate hearing of your experiences in dealing with it.

If there are other good articles I can share with my EP, that would be helpful. Other helpful approaches folks have tried, like going off beta blockers, etc.

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grace123


Still seeing what the "culture" of this online community is as someone who's completely new here. I shared in another post to introduce myself. Saw that a fair number of people seemed to have read it. Found it a little odd that no one reached out with any kind of welcome, but OK, whatever.

Think of a message board as kind of like a public park, with people coming and going. When was the last time you walked into a park and were welcomed?

Grace,

Sorry you feel you got a poor welcome, but try to understand that you described some extremely unusual treatment. Virtually all EPs would consider taking someone off an anticoagulant three weeks after an ablation to be downright dangerous. It's hard to understand why your EP didn't try other anticoagulants. Did he even discuss it with you?

The beta blockers are neither here nor there. If you want to stop them then go right ahead. They don't prevent afib anyway, and they aren't a safety issue like the anticoagulant. Just be aware that stopping them will increase the heart rate you experience during afib episodes. I personally despise beta blockers so I can certainly understand not wanting to take them. But if you begin taking flecainide they will become a safety issue because flecainide without a rate control drug is potentially dangerous. There are other antiarrhythmics that don't have that issue. Has your EP discussed any of them with you?

I'm sorry your ablation failed but I'm afraid it did. You're well beyond the blanking period so there won't be any further improvement. I happen to know far more about failed ablations than I wish I did.



Edited 1 time(s). Last edit at 08/17/2018 03:21PM by Carey.

Grace,

I’m a PhD-educated paroxysmal vagal AFr of 20 years standing and I’ve been hanging on this forum (and devouring any and all research) throughout that time under one nickname guise or another.

I regret to say I’m pretty much with Wolfpack and Carey on this.

Please don’t make the assumption that all doctors, cardiologists or even EPs know what they’re talking about. Do lots of research, keep an open mind, and travel carefully down this AF road.

With AF at 8 months your ablation was not an outright success. Any repeated AF outside the usual 3 month blanking period is testament to that. BBs are not good news for vagal AFrs. Anticoagulation really should be continued for 3 months after an ablation - and I don’t mean aspirin.

Wishing you all the very best,

Mike F

Mike,

Good grief.

Again, how about perhaps actually asking a question about my experience instead of more second-guessing and judging? With all respect, you might learn something, too. Nice that you have a Ph.D, however, I'm failing to see how that has anything to do with the conversation. Are you trying to position yourself as somehow smarter than poor stupid me? That's amusing.

The funny thing is, I don't think you and the others realize how off-putting your comments are. Why would I take the advice of people who respond in this way? I mean, seriously....

Believe it or not, I'm actually not an idiot, guys. My case is unusual because that's just the way it is. As I said, I'm extremely sensitive. The challenge for those who've chimed in is that there are people like me who don't fit into the proscribed view of what you think should be happening, what dosage of medication, anti-coagulation, etc. There's plenty more I can share about that, but I don't sense much in the way of open-mindedness in these responses.

I never said I'm starting to take Flecainide for rate control, so there's no need to get in an uproar over that. I have it for p-in-p to stop episodes.

I'm quitting the beta blocker. The herbs I'm taking (don't go ballistic on that; they are natural versions of pharmaceuticals) calm the heart and my sense is that this is helping to keep my rate down. I haven't had a rate problem for years.

I definitely know that EPs and cardios don't know everything! And most important to me, a similar dynamic to what you guys have launched is common. Not listening to the person's experience, not trusting it, but leaping to conclusions based on very little information and no curiosity in learning all of the facts.

There a craziness I've seen on forums.....people will admit that AF is definitely quite tricky to deal with. That it's highly individual in terms of treatment, of necessity.

But then there are responses like these.

Can you not fathom the possibility of a cardio and EP and Doc of Integrative Med each taking the time on multiple occasions to discuss in depth with me their concerns and my reality and coming to a reasonable resolution that works for us? Well, try doing that. Yes, it actually happened. Wow.

I'm a very low stroke risk. Xarelto is a nightmare for me, whether you guys like that or not. How crazy is it to tell someone you know better than they do what you should do with a medication?!

My cardio and EP are fine with me being on aspirin. My Integrative Med doc has me on herbs (again, natural pharmaceuticals that, no, are not FDA approved because there's no money for anyone in researching natural substances) that are blood thinning, too. No, I'm not taking nattokinase and am not interested in talking about that.

I am fine with taking aspirin. So please chill, guys. If you're still in an uproar and are certain I'm about to have a stroke, please do me a favor and keep it to yourselves, OK? At this point, I'm not interested in your advice or strong reactions about it.

Personal experience with Vagal Afib, OK.

All the best,
Grace

Hello Grace - First - Welcome.

We, at afibbers.org, are a mixed group of afibbers and former afibbers who have either been successfully ablated or have found a "cure" by various assessments and nutritional corrections of imbalances that can contribute to Afib. The majority of our early contributors have eventually moved on and newer participants have joined in help answer questions and offer assessments, but some of us are still here. So over time, we have accumulated a large span of treatment variables outside the standard cardio meds and ablation procedures. We often ask a lot of questions or relate very obvious signals that often lead to AF. Just as you mention, sleeping on the right side and identifying certain foods or habits that tend to act as ‘triggers’ for some individuals… there are many ‘quirky’ things that are unique and often not obvious to the afibber unless mentioned. I’m glad you mention the FODMAPs because there are many cases where certain elements in foods or an insufficient microbiome or gut dysfunction underlie the onset of Afib.

Since you mention Vagal afib… I’ll respond that there are many afibbers who have discovered that element as a significant influence. I was one and yet that status was never a consideration when I was prescribed my first afib med…which was a beta blocker. It was ineffective and made me feel very sluggish. As far as I could determine, it did nothing to reverse the Afib trend but in my early afib years, the events were (thankfully) very infrequent. I found this website and began participating in 2002... much the way you have today... curious about various of aspects or 'nuances' about Afib that I might not be learning from the various physicians I was consulting. Early on, I was introduced to the term, Vagal Afib, and one recommendation was to do arm exercises at bedtime to elevate my heart rate before lying down when it lowers even more.… (by then I was off the betablockers so the lower HR was my own natural status) and I was using the PIP approach for when I did go into Afib because it worked better for me not to be medicated continually. The bedtime arm exercises did help for a time but not permanently.
About that time, I tested low in intracellular magnesium and marginal on potassium. Correcting those helped significantly.

Our sleuthing methods for helping newcomers typically involve questions about lifestyle risk habits along with other practices that are known to add up to various imbalances that can contribute to the Afib tendency. It's not intended to be rude or overly personal. Age is a factor as well as weight, activity levels, alcohol consumption and more. Over time, we’ve observed patterns that stand out as 'pitfalls' that need to be examined. Sorry if you felt the interactions are invasive but often we find patients who are given misinformation or incomplete information along with advice that is definitely not considered ‘cutting edge’ practice.
Most importantly, we try to help those interested in learning the very latest according to the top frontrunner EPs in the field of atrial fibrillation.

I agree that beta blockers are not helpful for most vagal afibbers and I also agree that 8 months post-ablation, if you are still having arrhythmia, the ablation is obviously not effective. I’ve had three ablations; the first lasted 11 years followed by two more to manage the more complicated areas in the Left Atrial Appendage that were not typically treated back in 2003.

I’m pleased to read that you consult with an Integrative Medicine practitioner because that combination of sleuthing is very important to overall health outcomes in the “long haul” and I presume you are well aware of the specific nutrients that help maintain the heart’s healthy electrical conduction electrolyte balance. Also markers of inflammation are important to monitor since that also serves as an irritant to heart cells…. just two of many important areas of concern to optimize optimal balance not only in heart cells but all our cells. I’d be happy to direct you to more specific details if that’s of interest to you.

Best to you,
Jackie

Grace, I and others have asked you several questions but you've ignored them. Nobody thinks you're an idiot but you told us alarming things, then won't clarify and answer questions, and you get upset that we don't ask questions.

As for being low stroke risk, nobody is low stroke risk three weeks after an ablation, so it's really hard to fathom what your EP's thinking was. And using flecainide as a PIP carries the same risk as taking it daily (actually more) so most EPs would insist on a rate control drug to take with it. Since you don't tolerate beta blockers well that would most likely be diltiazem.



Edited 1 time(s). Last edit at 08/17/2018 07:49PM by Carey.

Grace 123,
I sense a lot of anger in your posts and hope you will realize that most of the people posting here want to "help".... and are not trying to be antagonistic

. I've had 3 three ablations in order to maintain NSR and I realize that a-fib and its triggers can affect each individual differently. We can each react to medicines and procedures differently as well.

I agree with those who are concerned that your ablation (after 8 months) would be considered unsuccessful. I especially agree that you should be taking an anticoagulant as a safeguard against the stroke risk. Aspirin alone will not give you the protection you need. This is a well documented fact. It would be wise to take into consideration some of the opinions that have been voiced here. They could be important for your future health.

You are certainly welcome in this forum....but please do not ONLY consider what you seem to have already decided is in your best interest. There may be some other viewpoints expressed here that deserve your investigation and consideration..

Best wishes to you....and I hope you will get more responses about vagal a-fib from members of this group, as that is your primary interest.

Grace

This site is, and has been a god send for those like myself who suffer with ongoing Vagal AF and can see no light at the end of the tunnel due to other medical conditions.That said, when I ask a question of the forum members I read each answer avidly and take what I need from each. If people seem to be coming across as arrogant or brusque that is a perception and is certainly not true.

Those like Carey and Jackie and Wolfpack and many others on this site have been around the block countless times with this condition and are providing you with information for you to disseminate and use as you will. They at all times have your best interests at heart (pun intended). They certainly don't need me to "stick up for them" as such but I feel you have probably misinterpreted the commonsense answers offered.

When you ask a question of the Forum members they answer honestly within the scope of their own experiences, and some of them have extensive knowledge about AF. If you already had decided everything your practitioners had advised was correct then I'm at a loss to know why you asked the questions.

I am a Vagal Afibber and take Metoprolol, small dose 12.5mg Bi daily, which as suggested is probably not doing much for me. I also take Eliquis 2.5mg Bi daily. What I have found very helpful is the Essential Trio as described on this site, keeping hydrated at all times, being aware of your personal triggers, and knowing when you are becoming over stressed physically and mentally. Food and eating for me is a trigger and I believe my Vagal nerve is out of sync and I am for ever researching ways to improve it. I say read read read about AF as knowledge reduces the fear.

All the best with whatever you decide to do, trial and error is a big part of the condition but you have the rest of your long life to discover what is the right way forward for you.

Jackie,

Many thanks for your kind, lovely, and informative note. I appreciate it very much and will look into the information.

To the rest of you:

I don't feel obligated to share more details about my medical condition with people who've communicated with me in the manner that you have.

There is not a "right" or "wrong" here, in terms of me simply not being able to understand the words on the page written by these helpful people. Do you even understand how condescending it is to imply this, I wonder?

The insistence on how "wrong" I am, how I don't "get" how helpful everyone is; it simply does not work for me. Period. I'm the one who decides what is helpful for me and what isn't. Not you.

The greatest wisdom I've learned from my AF experience has been to become extremely discerning about who I allow into my life, about who I listen to, especially with regard to medical issues. If there is not a palpable sense of respect, compassion, and kindness present, and a true sense the other person will actually *listen* to me instead of bombarding me with their advice, I am just not interested.

There are lots of smart folks out there. Brilliant docs I've known. Who are completely clueless at connecting with the patient. I've suffered greatly as a result of allowing these people to care for me, for tolerating crap that did me harm. I'm done with that.

I've become "spoiled" in the best possible way by my Integrative Med doc, who is perhaps the kindest, most gentle human I've ever met, along with being brilliant and a gifted healer. He taught me that in Chinese med, the relationship with the patient is where the treatment begins. It has made an enormous difference to me on every level.

For this reason, I am just done putting up with people who are more interested in telling me what to do and judging me instead of treating me with respect, kindness, compassion, and openness. I have fired docs for this reason and it has served me well.

To be clear - I am not interested in getting any more comments full of attempts to help me understand how wrong I am, how informed everyone is, and how I just don't get it.

I will ignore them. Please just stop it. Ignore me if you don't like what I've said.

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grace123
To the rest of you:

I don't feel obligated to share more details about my medical condition with people who've communicated with me in the manner that you have.

I'm sorry you feel that way.

Bit sad, really. Suspect there are a few more problems other than afib to address?

Best wishes to you Grace! Hope you find answers.

I, too, am sorry that you have been offended by posts that I and other members of this forum have made. It was certainly not my intent.
I am wishing you the best and hope solutions to all your problems will be forthcoming from the doctors that you trust.

Grace, really sorry to learn you found my post offensive in any way. I mentioned my own PhD only to try and give my opinion a little weight in terms of me being someone who knows how to research thoroughly.
Genuinely wishing you all the best for the future,
Mike F

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mwcf
. I mentioned my own PhD only to try and give my opinion a little weight in terms of me being someone who knows how to research thoroughly
Mike F

..but clearly not in psychology, right? (sorry, couldn't resist )

Grace, as one of the many people who responded with empathy and a genuine desire to help, I too am sorry if you felt hurt by my comments. Take very good care of yourself.

Sorry, I read all the answers, I found nothing offensive, I don't understand Graces responses. I have had AF episodes off and on for almost 20 years, I have had differences of opinion with some on this site but I figure they have as much right to their beliefs as do I.

Liz

Grace, I've been on this Forum for 12 years and I can tell you it's the best you'll find. There two things you might think about.

1) The purpose of those who replied was to help you.

2) The things they've said about anticoagulants are not their own ideas; they're from the worlds greatest experts on Afib.

When the three top experts in the world; Dr Natale, Professor Jais and Professor Haissaguere say that an anticoagulant like Xarelto, Pradaxa, Eliquis or Warfarin is needed for three months after an ablation and that aspirin is not a substitute you can be sure this is the truth.

I've been here 14 years. What Sam said.

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GeorgeN
I've been here 14 years. What Sam said.

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Grace
I am fine with taking aspirin. So please chill, guys. If you're still in an uproar and are certain I'm about to have a stroke, please do me a favor and keep it to yourselves, OK? At this point, I'm not interested in your advice or strong reactions about it.

End of story