If you have Vagal AF should you be id... - Atrial Fibrillati...

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If you have Vagal AF should you be identified when they join the forum?

OzRob profile image
75 Replies

I am not sure what percentage of AF sufferers have pure Vagal AF, my guess is that it is a small percentage.

I have pure Vagal AF and read posts daily, how many posts relate to my type of AF? From what I read not that many.

If you are new to the forum with Vagal AF, as I was when I joined. You will read everything posted and then apply those responses to your own condition.

Should people when posting, or at least the stalwarts here that read and post often just take the time to ask the question, do you have Vagal AF or Adrenergic AF.

If you search types of AF on the web you are given 4 types, Paroxysmal atrial fibrillation, Persistent atrial fibrillation, Long-term persistent atrial fibrillation and Permanent atrial fibrillation.

These are not types of AF, they are stages of AF.

As far as I am concerned we have two types of AF, Vagal AF and Adrenergic AF.

I know many of you will think I am poking the bear again, but I think it is important for the small percentage of Vagal AF sufferers to bat for them, after all Australia need just 146 runs in 70 overs to win the Ashes outright, that should at least bring some responses to my post.

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OzRob profile image
OzRob
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75 Replies
Petaca profile image
Petaca

So how do you identify whether you have Vagal AF?

Autumn_Leaves profile image
Autumn_Leaves in reply toPetaca

My thoughts exactly! Many people who describe themselves as having vagal AF have self-diagnosed after watching YouTube videos. It’s certainly not a formal diagnosis in the UK. It’s more like speculation because to my knowledge there’s no test. It may play a role so I’m not ruling it out as a contributing factor. But it’s not a diagnosis.

in reply toAutumn_Leaves

I’m not sure self diagnosis by You tube would help me as I’m very aware of the insidious nature of confirmation bias reinforced by repetitive messaging. … I think I’d be immune to it but I’ve seen quite a few intelligent folks sucked into the world of medical and dietary hocus pocus available on You Tube and other sources that I stay clear almost all of the time.

Autumn_Leaves profile image
Autumn_Leaves in reply to

I’ve also witnessed some intelligent people fall for all sorts of nonsense in the alt-health space, and I’ve had a lot of faith in what I believed to be science-based research but in reality was weak evidence from animal studies that turned out to have very little relevance or no evidence in humans.

As for the explanation vagal of AF, I don’t rule it out, but for people in their later decades it’s more likely to be a consequence of the heart remodelling itself in response to valve regurgitation, and for others there may be a degree of CVD as well and that can also contribute to the development of AF. There are also people who report that their parents and grandparents had AF, so there is clearly a genetic predisposition for some, but it doesn’t apply to everyone. I don’t believe there is ever one singular “root cause” to any long term condition. It’s always a convergence of many different factors and probably over the decades.

Autumn_Leaves profile image
Autumn_Leaves in reply to

As someone else mentioned, sleep apnea is a factor for some people but not necessarily everyone.

OzRob profile image
OzRob in reply toPetaca

It took about a year after my diagnosis of AF for me to identify that I had Vagal AF. It was becoming more frequent so I started reading a lot more about AF, this is the first article I read richardbogle.com/blog/vagal...

Then I came across this video by Dr Sanjay Gupta youtu.be/ivof8UUKW3M

AustinElliot profile image
AustinElliot in reply toOzRob

Hi Rob, thanks for sharing the blog, I am pretty sure mine are vagal, all my episode initiate during sleep (or waking) after being dehydrated, or possibly a big meal. I just completed a sleep study, so will see if its Sleep Apnea.

Markham profile image
Markham in reply toPetaca

I have a lot of belching and wind then I know my vagal AF will start all the thumping and fast.. slow..missed heartbeats will start..I even have been on the verge of passing g out with the top of my heart Chambers flutters like butterfly's fluttering g in my chest I feel faint then my heartbeat returns to normal but I still feel panicky and shocked at the way my heart behzvrs after 10 years of all this...but then I will recover for weeks before I get bad bouts again.

BenHall1 profile image
BenHall1

No, they are types - not stages ! I was diagnosed with paroxysmal AF ....it has not progressed and nor do I see it doing so. I have read of others on this forum, over 13 years state that they have persistant or whatever.

Cricket ...this has been the most boring Test series ever, dull, dull and duller. The commentary ( at least in Pommieland ) has been rubbish with only two making it worthwhile listening to, Vaughan and McGrath. Oh! for the days of Richie Benaud and Henry Blofeld.

Only one winner .... rain! Glad I didn't pay real money for a seat in the stands.

🏏🏏🏏🏏🏏🏏🏏🏏

OzRob profile image
OzRob in reply toBenHall1

If you do an internet search 'Stages of Atrial Fibrillation' you will be surprised by how many cardiologists refer to AF in stages.

I would say the majority of cardiologists refer to AF being 4 types.

Then again, most cardiologists don't recognize Vagal AF.

Ppiman profile image
Ppiman in reply toOzRob

I find this all very interesting so thanks for raising it. From what I have read, having a GP who thought I had "vagal" AF but then having a cardiologist assure me not, is it that the term is too vague to be useful? For instance, a full or bloated stomach is a common "trigger" and is often cited as a form of "vagal AF" (well, from what I have read - but it's never an exclusive trigger and studies suggest that the triggers for most AF seem unable to be identified); but it's possible that the trigger is physical from upward pressure on the heart via the diaphragm, rather than "vagally stimulated". Pressure on the heart has been shown to induce slight ectopy, and this can trigger AF.

I can't find very much from my own internet research to support the vagal theory. Have you found more? The linked video from Dr Gupta is not really all that informative in this way, I feel.

Steve

OzRob profile image
OzRob in reply toPpiman

Hi Steve,

It has to do with Vagal tone, or vagal activity. Extreme athletes can get AF as they can have very high vagal activity which stimulates the Vagus nerve, in their case it has nothing to do with remodeling of the heart or changes in heart structure.

When sleeping your vagal activity increases, hence the reason why people with Vagal AF have AF at night. Big meals and digestion increases vagal activity which also can lead to Vagal AF.

I could bring on AF through change of body position. I would wear my heart monitor and lie down and AF would start, sit up and it would stop. Not a trigger but a switch.

So I started to think of a switch rather than what people here call triggers when it comes to Vagal AF. I could switch it on and switch it off.

The funniest way I found to switch AF off was to place my thumbs in both my ears and then move them up and down for 20 seconds, it switched an AF episode off (and made me laugh).

So when people here say, AF is AF and that is final, they don't really understand that perhaps some people have something that is different to what they are experiencing.

Ppiman profile image
Ppiman in reply toOzRob

Thanks for that. The cardiologist I saw said that physical vagal “irritation” was a rare condition and never causes simple AF since the nerve innervates so much more than the heart. Such irritation, he said, would first cause severe bradycardia followed by swings of tachycardia.

Fascinating, though.

Steve

OzRob profile image
OzRob in reply toBenHall1

Yes, the cricket was boring...

stoneyrosed profile image
stoneyrosed in reply toOzRob

The Ozzie's played boring cricket, however the English played on the front foot throughout the whole series, and were very unfortunate not to reclaim the ashes. By the way could a person have both adrenergic and vagal AF?

OzRob profile image
OzRob in reply tostoneyrosed

Yes, you can have both. I had only ever had one episode of AF during the daytime (of many hundreds of episodes). Was that single one adrenergic? I don't know.

I have recorded my whole journey of AF, taken notes and used a heart monitor to capture everything once my AF became more regular.

BobD profile image
BobDVolunteer

You are very much a minority as few doctors even accept that such a thing exists. You have AF you will get AF. What triggers it is irrelevant for the most part. Sorry .

OzRob profile image
OzRob in reply toBobD

It is not what triggers AF that I am disputing. It took me over a year to find out about Vagal AF and how to use a Valsalva maneuver to stop the AF in it's tracks.

If my AF is as you say, much a minority, should that minority of people at least have the opportunity to learn about their condition?

frazeej profile image
frazeej in reply toBobD

I would put "vagal" AF in the same basket with magnesium supplements. Some folks will swear by them even though there's no credible evidence that they do anything.

JimF

OzRob profile image
OzRob in reply tofrazeej

You can read papers about vagal AF and adrenergic AF.

Drounding profile image
Drounding

I believe I may have a mix of Vagal-AF and Adrenergic-AF, and I suspect that may be the case for many people. My episiodes often relate to stomach issues, bloating, over-eating and spicy food and often happen when relaxing or sleeping when my heart rate is low.

That said I also know that my stress levels play a large part in it and doing more excercise than usual, as does bad hydration, so I fall into both categories. I've never been diagnosed with either and I would expect it would be rare that it is clear cut for most people.

This quote from a-fib.com sums it up for me:

Adrenergic and Vagotonic forms of paroxysmal A-Fib are uncommon. The majority of patients with paroxysmal A-Fib do not have a clear autonomic pattern. Those with Lone A-Fib (no other related medical condition) seem more prone to Vagal A-Fib. (Many people have a mix of both Adrenergic and Vagal A-Fib.)

OzRob profile image
OzRob in reply toDrounding

Totally agree, you can have a combination. And yes, you say your AF comes on due to stomach issues, bloating, overeating, and spicy food, which often happens when relaxing or sleeping and when your heart rate is low. That points to Vagal AF.

My question is about identifying if you have Vagal AF, you seem to have done your research.

BenHall1 profile image
BenHall1 in reply toOzRob

Have you considered making your request known through the sponsers of this Forum, AFA and see if there is anything ( plse don't ask me what - I just use computers - no idea of all the backroom stuff) they can do to promote this approach you are discussing ?

OzRob profile image
OzRob in reply toBenHall1

I would not say it is an approach, the problem with forums is that what is said today gets buried tomorrow. How many times do you see the same questions about AF when all the answers are already inside the forum. It has a search function but not an index to study different aspects of discussion.

I am slowly building a website about my own AF Journey which leans towards Vagal AF as that is what I have. And posts like this one are invaluable to understand what AF sufferers actually know about the differences between the vagus (vagal AF) and the sympathetic nerves (adrenergic AF).

BenHall1 profile image
BenHall1 in reply toOzRob

As I may have said, my AF journey began in January 2010. My official diagnosis was paroxysmal AF. Vagal AF didn't enter into it, even from the Consultant. What the consultant did say was that I may well be asymptomatic. In my view the worst of two evils, paroxysmal and asymptomatic. I hadn't a clue what AF was. After 6 days in hospital being checked and tested and dosed with all sorts of stuff I was sent home, back to work 9 weeks later.

Then I went online and found this forum ..... in those days ... hosted by Yahoo, and yes there are still a few of us around from those days - 13 years (and in some cases) more than that. At least two of whom still contribute on here. As time passed I clocked my AF events occurring after food.

More time passed and I noted others saying the same thing. Then I noted two contributors describe the vagal nerve ........ and the rest is history. Thanks to my Nutritionist I discovered that by calming the VN I calmed the heart and now all these years later I am free.

My point is this, Most of what is written and posted on this forum I automatically delete. Doesn't concern me, so stuff getting buried - I don't care. After 13 years (14 in January but hey, who's counting) I know exactly the user names who with all this time behind me will have something of value to say. Other user names are new/newer and I just eyeball the posts and let them go or make a contribution if I feel I can. Otherwise delete. If its something specific like cardioversion, ablation or some other heart/cardiac or other medical condition that a patient has and I don't - delete. Then I'm guided by the fact that pretty much all AF journey's are different, unique and individual to the sufferer. I guess the other thing is I don't let AF rule my life, in any way shape or form. - if I did I'd be on a fools errand. Anything on here that I value I copy and paste to My Documents and let my laptop accumulate all the files pertaining to me. Then I save to a portable hard drive. Sorted. These files also include many of the AF features you discuss.

TBH AF now is really of no concern to me ... it has been more than eclipsed by osteoarthritic pain in a range of joints - that said - I never take the lack of AF for granted ... I regard the condition as the most untrustworthy mongrel I could experience and I'm forever aware it could come back and mug the hell out of me.

Poochmom profile image
Poochmom in reply toOzRob

You are exactly right. Stomach problems and food triggers all point to vagal AFib as the vagus nerve controls brain, heart, lungs and stomach/gut.

BenHall1 profile image
BenHall1 in reply toDrounding

Hi,

You say .... My episiodes often relate to stomach issues, bloating, over-eating and spicy food and often happen when relaxing or sleeping when my heart rate is low.

When I first got my paroxysmal AF diagnosis back in Jan 2010 I eventually connected exactly these triggers to my AF kicking off. Had blood tests done for IBS and Coeliac Disease which were clear.

I then gave up all further ideas of talking to a GP or Cardiac Consultant and dealt with a Nutritionist ......... long story short ........... and although it took quite a few years of diet and keeping a food diary ......... sorted! Can't remember now my last AF event, definately 18 months but more like 4 years ago.

JFJ131 profile image
JFJ131 in reply toBenHall1

Looking at this older post…just wondering if you can share what you got sorted from the interactions with a nutritionist? …. Was it basically to eat smaller meals? Would appreciate you sharing any tips.

BenHall1 profile image
BenHall1 in reply toJFJ131

Hiya JFJ131,

No problems. I have transferred my comments from some past notes of mine for your info - however - I have to say, for me, eating smaller meals and eating my main meal of the day as early as possible in the evening were really "just fiddling around with the issues"

Long story very short. I was diagnosed with paroxysmal Atrial Fibrillation in January 2010 - within a year I found that my AF events were food related. Symptoms emerging were .... (not in any particular order and not all at the same time) - loud anti social intestinal gurgling, diahorrea, massive and painful bloating and burping. Saw GP who sorted blood tests for IBS and Coeliac Disease ... all clear. Only the massive and painful bloating would trigger an AF event. Gp offerred more /different tests which I rejected.

I then consulted a Nutritionist who undertook some tests and firstly put me on a course of Probiotics and got me to go gluten free, wheat free and oats free. Over the years that followed this new food plan was widened and now includes a range of vegetables too and other dry grocery foods et al. The plan was to calm the vagal nerve which, in an aggravated/inflammed state was the direct cause of my AF events.

My Nutritionist did guide me on analysing my food intake and she did also introduce me to FODMAPS by way of guidance and to widen my thinking. Ultimately though she was focusing not just on food per se BUT looking at ingredients of a range of foods that were troublesome for me. I kept a food diary. Managing food was a problem, Mrs Ben Hall was okay with this as she was able to control food by looking at labels etc. eating out, resturants, motorway services etc was a bigger issue as she had no control over stuff.

So all sorts of stuff I'd eaten happily over the years went in the bin. Onions out ... shallots were OK, lettuce out, tomatoes out, soft cheeses out, hard cheeses OK. No problem with green leafy veggies even though I am on Warfarin. Porridge out, fried eggs out BUT poached eggs and scrambled eggs are OK, Pork with crackling out - but small pork steaks, nice n' lean are OK, roast duck out. That's just an outline. We learned its just not the time of day one eats, but food itself and also food ingredients - so quiet a bit of detail involved.

Against this background and the onset of AF I reflected back over my adult life and I identified the start of gut problems back to about the age of 33. I began getting chest pains - got checked out and it was found my gall bladder was the troublesome bit. No action taken except medication and diet.

It took many years to get a grip of AF and food but I did and in more recent years some food I have been able to return to.

Hope this answers your questions. If you have any other query let me know.

John

JFJ131 profile image
JFJ131 in reply toBenHall1

Hi John, thanks for comprehensive reply. So I see lots of testing. Am I right to assume this was literally by for example eating a fried egg and testing pulse or feeling for AFib and then contrasting this to poached egg? Was it literally trying out like this? Strange isn’t it that one way an egg is cooked for example would make the difference. I will have lots of testing to try it seems …

Again, many thanks

BenHall1 profile image
BenHall1 in reply toJFJ131

It all comes back to fear and pain ............. in the context of my symptoms ........ loud anti social intestinal gurgling, diahorrea, massive and painful bloating and burping. For me all this was an incredible motivator - to become normal again.

1st step - I got into going Gluten, Wheat and Oats free, not just food but avoiding ingredients with that stuff in. Over a great number of months, 10 months even longer and my symptoms began to settle. But it wasn't enough. As you will appreciate, this covered quite a large part of a diet. So, back to the fried egg experience - I didn't need to test pulse or check for AF ....... I just felt crap, beyond crap and I could feel crap going on in my chest ........ feeling like a bag of moist earth containing wriggly earth worms or squadrons of butterlies having dogfights.

Then came the analysis bit - after each meal I made mental notes as to how I reacted to the food/ingredients, then put notes on my computer. I built this up over time, however, if I ate a certain food and developed any of my symptoms I cut it out. Immediately. Eventually it became obvious that it wasn't just food or ingredients, but how the raw food changed during the cooking process - particularly if I dined out. Weird results ... I found I badly reacted to Lettuce, broad leaf green veggies also brussels and peas, yet, runner beans and broad beans were fine. Then of course is what we don't know what farmers spray onto these crops whilst growing in a field and what of those chemicals are carried into the food chain !!

When I first started this journey I found the Nutritionists website B.A.N.T. was very useful ( British Association for Nutritional Therapists ).

I can't claim that this approach to AF problem solving is for every one ( my GP just rolls her eyes ) but for me, with my paroxysmal AF, it became clear that much of what I was digesting was inflamming/ aggravating my Vagal Nerve.

And today ?? not cured, still have to be very food aware but reckon I go 4 to 5 years inbetween AF hits. A bit longer for a manic AF event. For me its a case of calm the vagal nerve, calm the heart.

Apologies for the length of this.

John

pusillanimous profile image
pusillanimous in reply toDrounding

Although I come from a family with familial AF, mine was not diagnosed until I was prescribed an anti-biotic which did not agree with me. This caused me to vomit uncontrollably and I was summoned back to the GP's surgery where my HR was registered at 140 and the ECG showing Afib - I was sent off to the Cardio. Since then, although I have very few AF events, I tend to eat small amounts at one sitting, and even then my HR rises to the 80's. I wonder if the Vegas nerve is involved in my version !

Autumn_Leaves profile image
Autumn_Leaves in reply topusillanimous

Your HR rises after eating because your body has to do the work of digesting and metabolising your food. It happens with everyone and that includes people without AF or any cardiac condition, or any medical condition whatsoever. That’s just normal biology. For people with a pre existing heart condition heavy meals can put more demands on the heart, as can alcohol. The problem isn’t the eating. The problem is that the heart itself isn’t functioning properly. The “root cause” is a problem with the heart.

Teresa156 profile image
Teresa156

Hi OzRob,

I think it’s a hard one for people to identify if they have vagal afib or not and as others have said, a lot of medics dismiss it. I know mine did.

One day in the future, it might come to fruition, you never know, but for now I think it’s a closed subject. I’m a ‘believer’ though and I’m happy to join your club as a fellow ‘Vagaller’, but I’m not that into cricket 😊

OzRob profile image
OzRob in reply toTeresa156

It should not be a closed subject. Just because it is complicated does not mean that it should be downplayed on the forum.

Just imagine a typical person who has just been diagnosed with AF and is referred to a plumber and not an electrician, as I was, you are already disadvantaged with your diagnosis. Most people don't question a doctor which means they are getting the wrong advice.

Even my first EP dismissed Vagal AF when I asked about it, that caused me to change EP's.

Teresa156 profile image
Teresa156 in reply toOzRob

I do agree with you. I just think it’s quite controversial and many just think Afib is Afib. Treatment seems to be the same, whichever Afib we have. I don’t think enough is still known about AF to be honest.

Autumn_Leaves profile image
Autumn_Leaves in reply toOzRob

Nobody is preventing any kind of discussion about vagal AF. My observation is that many people self diagnose after watching YouTube videos. If people can find their way to Health Unlocked then they can certainly find their way around YouTube. It’s hardly some big secret. The issue is, how does the belief in AF change how people manage AF, and how effective are the techniques that are shared online? Valsalva manoeuvres aren’t exactly top secret information. In fact my GP recommended them for Eustachian tube dysfunction. Breathing exercises aren’t a secret. Such practices including mindfulness and meditation apps are frequently recommended by the NHS (UK) although not as a specific prescription for diagnosed cardiac. conditions that may improve quality of life for any number of conditions. But what happens when those techniques to control vagal AF aren’t working? Do people self un-diagnose themselves? As I said, there is plenty of lifestyle and self care advice available, whether it’s stress reduction, exercise, dietary advice. It’s ubiquitous to the extent it’s invisible. Certainly with cancer research, there are responders and non responders to surgical and medical treatments, and there are responders and non responders to lifestyle measures. I’m sure it’s the same with many other conditions including AF. It’s no reflection on the individual, or their attitude. These things are impossible to predict. There is nothing wrong with anyone trying any of the vagal exercises or any other lifestyle advice shared here. I don’t think a belief in whether someone has vagal AF, or even if they believe/don’t believe vagal AF is a thing should matter. Something either helps or it doesn’t.

Andreas22 profile image
Andreas22

I have vagal paroxysmal afib, my EP clearly acknowledges vagal afib is its own category. However (and I hope this doesnt disappoint you): when it comes to treatment, options are very similar. I just had an ablation a month ago for which it made zero difference whether it is vagal or not

SeanJax profile image
SeanJax

The end point of Afib is to get rid of all episodes thru medical treatment or abalation or hybrid convergent ablation or mini maze...And not getting a stroke and or heart failure. Vagal or not, what is the point of it?. Afib is afib, adrenergic or vagal you get an episode and that is it. Try to have a good and healthy life style and try to manage the condition one day at a time. Avoid all possible triggers and manage all modifiable risk factors is more critical than knowing vagal or not vagal.

OzRob profile image
OzRob

Yes, the options are similar when it comes to treating AF. I am booked in for an ablation in October.

I just wish I had found out about Vagal AF at the very beginning, it would have meant much better control of my AF rather than the AF controlling me.

Information is very powerful, and any patient should have all the information they need about the condition they suffer from.

I have documented everything about my AF, I also have 6 months of wearing a heart monitor for the sake of my own study.

It has helped me and may also one day help other Vagal AF sufferers.

Poochmom profile image
Poochmom

There is a heart surgeon who specializes in AFib and he believes that lone AFib (no other comorbities or heart problems) is vagal AFib no matter the stage. He treats it as such with surgical ablation of the ganglionic plexii( part of the vagus nerve) and is very successful stopping AFib. Higher percentage of success than ablation itself

Sambaqui profile image
Sambaqui in reply toPoochmom

That sounds interesting, Poochmom. Can you point me to any further information about this man and his ablation procedure?

Poochmom profile image
Poochmom in reply toSambaqui

His name is Randall K Wolf and you can go online at wolfminimaze.com to learn more. He also has many you tube education videos explaining it and answering people’s questions. Additionally there is a Facebook group wolf MiniMaze you can join where there is lots of information from people who have had the procedure. All I am saying actually is to do the research into your options and don’t limit it to just regular ablation.

Additionally there is a surgeon Dr Toshiya Outsuka in Japan who was trained by Dr Wolf who many people who can’t afford to go to the US are going to for the procedure.

secondtry profile image
secondtry in reply toPoochmom

I second Sambaqui's request 🙏🏻🙏🏻

Poochmom profile image
Poochmom in reply tosecondtry

His name is Randall K Wolf and you can go online at wolfminimaze.com to learn more. He also has many you tube education videos explaining it and answering people’s questions. Additionally there is a Facebook group wolf MiniMaze you can join where there is lots of information from people who have had the procedure. All I am saying actually is to do the research into your options and don’t limit it to just regular ablation.

Additionally there is a surgeon Dr Toshiya Outsuka in Japan who was trained by Dr Wolf who many people who can’t afford to go to the US are going to for the procedure.

secondtry profile image
secondtry in reply toPoochmom

Ah yes this guy has been mentioned quite a bit here, great option to consider thanks for your time.

Teresa156 profile image
Teresa156 in reply toPoochmom

I third Sambaqui’s request. 😊

Poochmom profile image
Poochmom in reply toTeresa156

His name is Randall K Wolf and you can go online at wolfminimaze.com to learn more. He also has many you tube education videos explaining it and answering people’s questions. Additionally there is a Facebook group wolf MiniMaze you can join where there is lots of information from people who have had the procedure. All I am saying actually is to do the research into your options and don’t limit it to just regular ablation.

Additionally there is a surgeon Dr Toshiya Outsuka in Japan who was trained by Dr Wolf who many people who can’t afford to go to the US are going to for the procedure.

Teresa156 profile image
Teresa156 in reply toPoochmom

Thank you so much Poochman,

I really appreciate your detailed reply. I had already heard of the mini maze and hope it comes over to the UK at some point, but I won’t hold my breath.

Thank you,

Teresa

Poochmom profile image
Poochmom in reply toTeresa156

Hi Teresa. There is a surgeon in Japan that does the WMM and it is a Lot less expensive than the US. Several of our friends across the pond are going to Japan. I know it isn’t possible for everyone and I truly hope that this technique makes it way to the UK. It is already beginning. Contact MummyLuv. She had a hybrid MiniMaze there and it was very successful for her. She has tons of info for you.

Teresa156 profile image
Teresa156 in reply toPoochmom

Thankyou Poochman,

I really appreciate you coming back. I have heard on here about the success of both USA and Japan procedures. But I didn’t realise the mini maze could be specific for vagal afib. My afib burden is currently very low fortunately ( even though I’ve had it for 18 years) I’ve had no episodes this year so far🤞 but Afib is always ‘there’ lurking…it’s “lone” too, with no comorbidities…I’ve nothing I can link it to.

I wouldn’t rule out something like this procedure in the future.

Thankyou again and all the best to you,

Teresa

Poochmom profile image
Poochmom in reply toTeresa156

Yes that is why Dr Wolf pioneered the MiniMaze. He developed the tools used for the surgery. Because he believes that lone AFib is vagal AFib. That was the whole point of his procedure. He also developed the atricure clamp that isolates the LAA so no more blood thinners ever for AFib even if it came back. He gave me a 93% chance of success on the MiniMaze and the clip reduces blood clot risk by 97%!! Those are impressive numbers. I was having episodes every 5 days when I went to Houston in June 2022. Have not had one since. On no meds. He has patients out 15 and 20 years with no return of AFib. The guy is a genius and everything a doctor should be. Just my humble opinion.

Teresa156 profile image
Teresa156 in reply toPoochmom

Thanks Poochman,

It sounds very impressive and very promising. Long may you be Afib free 😊

Teresa

TeaFree profile image
TeaFree in reply toPoochmom

And a fourth from me.

I had an ablation from a specialist who purported to entertain a possible vagal trigger for my AF and even to have given attention to 'ablating vagus nerve endings', which my current Cardio raises an eyebrow at. Maybe they were just humouring me.

However, I am interested now primarily because I am exploring potential links between LPR (laryngopharangeal reflux) and 'lone' AF.

Problem being of course that the 10th cranial (or 'Vagus' - wandering) nerve ennervates a whole heap of things - as anyone who has had an ablation will know, because digestive immotily and other digestive dysfunction post op goes with the territory.

Insult to the vagus nerve is a very common cause of pyloric sphincter dysfunction, which can in turn exacerbate (common) problems with pepsin aspiration through the lower oesophageal sphincter from the stomach into the oesophagus, upper airways and sinuses (causing chronic throat-clearing, hoarse voice, post-nasal drip etc., etc.,).

Whereas, my wider reservation about repeat ablation (the only game in town really) is just that it is like combating a house-fire by knocking off the alarm.

Poochmom profile image
Poochmom in reply toTeaFree

His name is Randall K Wolf and you can go online at wolfminimaze.com to learn more. He also has many you tube education videos explaining it and answering people’s questions. Additionally there is a Facebook group wolf MiniMaze you can join where there is lots of information from people who have had the procedure. All I am saying actually is to do the research into your options and don’t limit it to just regular ablation.

Additionally there is a surgeon Dr Toshiya Outsuka in Japan who was trained by Dr Wolf who many people who can’t afford to go to the US are going to for the procedure.

TeaFree profile image
TeaFree in reply toPoochmom

Yes, many thanks, I had wondered if this was the 'Mini-Maze' man. My cardio did rather skip over this option in discussing the Maze procedure (7 inch scar "at least") and then passing onto 'Convergent' hybrid surgery. After which a repeat ablation looked (probably not coincidentally) like a welcome reprieve! So, I agree that getting informed is key. If only so we can live with our own choices, in a field where there is no assurance of lasting success and, necessarily, little cognizance of long-term ramifications.

Poochmom profile image
Poochmom in reply toTeaFree

The hybrid is similar and some may even ablate the plexi. Ask MummyLuv she had a hybrid MiniMaze there in the UK.

The WMM is a one and done however some people especially those with prior ablations are prone to flutter afterward. Flutter is a side effect of ablations. But a flutter ablation is highly successful and easier to do as there is no septum puncture.

Good luck in your journey. There ARE other options out there. Don’t just take what your EP says as th end all be all. EPs will very rarely recommend or agree with a surgical ablation. Most times because they don’t understand it and they can’t do it. Has to be a thoracic surgeon.

TeaFree profile image
TeaFree in reply toPoochmom

Many thanks Poochmom, and very interesting. Good to know we needn't go to Cinccinati if it comes to surgery. I guess I need to read up more on the vagal implications. Because if there are many different things that may affect the heart, all mediated by this nerve, then it is at least possible that ablating part of it may also affect many different things.

Poochmom profile image
Poochmom in reply toTeaFree

It does affect different things. As an example, I have had stomach issues for most of my life. I suffered with gastritis among other things. I was in the bathroom several times a day. Those problems all went away after my MiniMaze. So it does affect other things but not necessarily bad. My acid reflux went away and many people are able to get off blood pressure meds once the LAA is clipped. Do lots of research. Maybe join the WMM Facebook group just to get general information. Lots of good stuff there from people Who have had the procedure. That will give you some information for comparison when researching procedures on your side of the pond

Ala2145 profile image
Ala2145 in reply toTeaFree

I agree, TeaFree. And I believe my lone paroxysmal Afib to be related to LPR as well. If only I could get a doctor to at least hear me out, they might agree with me. While suffering with little help from doctors, I’ve done my own research out of pure despair and corrected the LPR as much as possible on my own with targeted diet changes and the addition of histamine blockers. Maybe I’m onto something as it has been 18 months without an episode.

I think I’m a case for OzRob’s point. If flagged for potential vagal characteristics up front, maybe some of these non-EP treatments could have helped me (and others) sooner. I think that’s the biggest shame of the whole industry is that, in general, EPs are unwilling to look at therapeutic treatments for the unique cases, or at least get us to the right professional. For some of us, albeit the minority, there ARE ways to put Afib into remission. Maybe because there’s so little medical research dedicated to it, I don’t know, but there is a huge gap in care between the GP and the EP where vagal afibbers suffer unnecessarily.

TeaFree profile image
TeaFree in reply toAla2145

Yep, we are certainly on the same page. And I think the key distinctions are between 'lone' and other AF, and for LAF the extent to which it appears to have a 'vagal' trigger.

Maybe it is just yet another dead-end - I have researched a lot over the 14 years since my own formal AF diagnosis - but LPR and thyroid/stomach are a focus for me presently.

And, as I have remarked elsewhere, the problem is that the dysfunction affecting our hearts is likely systemic, however medical practice is siloed and seldom joined-up.

Moreover, there is a marked lack of curiosity and propensity to embrace generic 'whac-a-mole' solutions that 'no one can get you' for prescribing.

Still, I had an extraordinary remission from AF last year. I really felt 'bullet-proof', and attributed this to finally hitting the right vitamin regime.

However, in retrospect it may equally have been due to a muffed regime of three short rounds of antibiotics prescribed by a novice GP to treat severe, prior UTI.

I think somehow this 'thre'penny-bitting' with trimethoprim and nitrofurantoin impacted something in my digestion which had been stimulating my AF. I do have a long diagnosed inlet patch in my oeasophagus, but no H Pylori has ever been detected.

Time was that inlet patches were deemed congenital, whrereas Barrett's was deemed caused by pepsin/acid. Now, there is more awareness of the impact of pepsin throughout the LP system - at least among ENT specialists. Gastric specialists are a hold out apparently and a lot of inlet patches probably go undiagnosed because their interest is elsewhere.

Of course the issue is that, apart from the mechanical and free radical assult the LA is subject to, its unique feature is that it is barely 3mm from the oeasophagus - as any EP has good reason to know.

Ala2145 profile image
Ala2145 in reply toTeaFree

Right on, TeaFree. I hope you get your situation resolved. You seem well equipped to manage the “systemic” nature of your / lone / vagal Afib situation and inspire me to do the same.

Do you feel you’ll be able to put Afib back in remission once you decipher and address your current issues? I’m curious how long I have to enjoy my current success before the tendency to break rhythm will strike once again.

TeaFree profile image
TeaFree in reply toAla2145

That's the incubus we all live with for sure: when will AF come back? Sometimes it's almost like wishing it will come back, just to eliminate the uncertainty!

But I sort of feel 'I shouldn't have this'. Which is why I believe, in response to the OP's reasonable point about vagal triggers, that these are subsidiary to the bigger question of whether patients have idiopathic, or 'lone' AF.

Not necessarily because it should (let alone will) make any difference to conventional treatment options, but because it sets the clock running on whether we might at least ameliorate our AF ourselves, before we feel obliged to call on someone/something else to do it for us.

It's natural to want to try to get out of the tunbril if you don't obviously 'fit the crime'.

If there is no 'smoking gun', it's logical to go looking for one. Just in case you can fix it, before you have to 'cry uncle' and face some sort of surgical 'guillotine'. That's been my thinking, these 14, years anyway. And, yes, to the OP's point the vagus nerve runs through a lot of possible lines of causation like 'Brighton' through a stick of rock.

Obviously, surgical interventions are neither riskless nor infallible (my EP - one of the most distinguished in the UK - puts his own ablation success-rate at 50:50 on a two-year horizon, though it's fair to say he gets difficult cases!) and drug regimes are invariably toxic.

The only progress seems to be in developing anticoagulants (I do not disparage them, having frequently been threatened with Warfarinsation before the drugs, and the dogma, changed. And several more are in the pipeline). But not rhythm drugs. Drug companies are happy with adjuvent, chronic regimes on the whole; cures not so much.

So, to use my housefire analogy, the medical focus is generally on either just knocking off the 'alarm' or stopping the AF 'fire' setting anything else of ours 'alight' (like having a stroke or heart failure). As I say, I don't diminish these endeavours at all, but it's not a good look. Most honest practitioners are chagrined at the dispiriting prognosis, wherein the long-term consequesces of even apparently successful surgical intervention are simply unknown.

So, more power to anybody's elbow in sorting out the mechanism(s) of 'lone' AF. Because any progress here will impact all AF treatment.

Consequently, it is important to know what we are talking about upfront.

I draw comfort from the way all those proton pump inhibitors and histamine2 receptor antagonists originally developed for the block-buster gastritis and and ulcer market 40 years ago (and invariably mispurposed to treat LPR, among other things, now) were rendered largely redundant, when it was found that the common bacterium H Pylori was strongly implicated in causing ulcers (for which the researchers received the Nobel Prize) not a superabundance of stomach acid, and responded to a simple course of antibiotic.

Matter of fact most people on a standard western diet, and particularly older people, could probably do with a bit more acid and pepsin - but only in the right places.

Sambaqui profile image
Sambaqui in reply toPoochmom

Thank you very much, Poochmom. Yes, like others, I have read quite a lot about Mr. Wolf and his procedure but did not know that it involved ablating the ganglionic plexii, being a part of the vagus nerve. I shall explore more. Thanks again.

secondtry profile image
secondtry

I suspect the Vagus Nerve contributes (ie not the sole reason) for most AF episodes people have. Like you, this influence is dominant for me and therefore I regard my AF as vagally mediated. For others, it might play a minor role and therefore not easily recognised by the individual.

I like your idea but probably unlikely for many to put such a sub heading in their bio.

Vonnegut profile image
Vonnegut

It seems those terms are not used in the UK. I just heard some mention of the possibility of the vagal nerve having an effect somewhere, possibly in AFA literature, but it hasn’t ever been mentioned by doctors.

Tommyboy21 profile image
Tommyboy21

I've definitely vagal AF. Random episodes over the years to daily. Realised they got worse when my neck back got really stiff. Tried a chiropractor who thinks my neck muscles are tight and inflamed compressing a nerve. Daily episodes went down to weekly. But came back as my neck stiffens again. Currently fortnightly chiro and hour massage. Standing at work has contributed to this.

Linesteps profile image
Linesteps

Hi I’ve always thought I have vagal af but when discussed with eps it isn’t given much attention , it’s worrying when treatment is completely different and I have been given bisoprolol as PIP which is totally contradictory!

AAJJTt profile image
AAJJTt

Hi

I was told my PAF has a 'vagal tone' by my cardiologist. This being when the parasympathetic nervous system predominates in quiet “rest and digest” conditions.

Typically, prior to my medication, the episodes of PAF occurred late night and early morning, when I was relaxed or asleep with a low heart beat. My HB is quite low anyway, combination of fitness and genetics I think but it does fall away a night.

Consequently, I take more Flecainide (double) in the evening dose, compared to the morning.

It does appear to work, I have had no detectable episodes for over 3 years now and generally fine & stable.

mjames1 profile image
mjames1

You raise some good points and thanks for bringing up this topic. There is a lot of literature online on vagal afib, for those interested in learning more.

Unfortunately, turning that information into treatment strategies is something that might vary from doctor to doctor, should they even consider this at all. Also, many of us may have elements of both vagal and adrenergic afib and/or with one changing more into the other over time.

There is still so much about afib we do not know.

Jim

OzRob profile image
OzRob in reply tomjames1

Hi Jim,

Perhaps some of the answers could come from people on this forum in addition to the professions.

I have pure vagal AF, only had it at night, and have been able to switch it both on and off. I have added a comment higher up in this post, just before responding to you about Vagal AF being a switch, not a trigger.

Robert

TeaFree profile image
TeaFree

Well, as a 'Lone' Affiber, if we are asking people to identify themselves 'at the door', it would surely be most useful to distinguish between those who have some recognised predisposing pathology (e.g. clinically diagnosed thyroid, kidney, heart or haemodynamic problem, other than LA enlargement), as opposed to lone AF - which is thought to constitute a minority of cases and arises in generally younger, fit (and, not uncommonly, athletic) adults.

I understand the impatience among clinicians about anything being an 'uncaused event'. But 'idiopathic' is just Ancient Greek for 'search us'.

As such, it warrants, a little, special, lateral thinking, I do concur.

Because one thing is clear and that is that all our metabolic functions are joined up - a system - and not infrequently impacted by our standard western lifestyle.

Despite which, we are also all unique. And medical prescriptions are most often lamentably generic, if only to comply with the ineluctable pull to 'best pactice', which can vitiate clinician expertise, judgement and discretion.

So, while apparent vagus nerve involvement is certainly not the only AF descriminator, let alone the principal one, or even an uncontroversial one, it most definitely has the potential to join up otherwise seemingly unrelated conditions that transcend the (astonishingly narrow) remit of the average medical specialist.

Moreover, there is a general medical blindness and lack of curiosity when it comes to ascertaining comparatively trivial-seeming causes for apparently serious conditions.

Which is, of course, why conditions become serious, even when their root origins may not even be a blip on the GP's radar.

The real danger for lone afibbers is that they, somewhat unwittingly, find themselves in line for some industrial strength solutions for something whose cause is by definition unknown, yet may actually intimate some 'under the radar' issue, amenable to less radical correction.

OzRob profile image
OzRob in reply toTeaFree

I like your opening, asking people to identify themselves 'at the door'.

I had an idea many posts ago of developing a set of keys, much like what is used to identify plants. Without any idea as to how to identify a plant, you work through keys to rule out features until you are left with the final genus, and species.

I am going to use my own studies of my own AF and things I have learnt about AF to try and create keys to identify my own Vagal AF and what stage it is at.

TeaFree profile image
TeaFree in reply toOzRob

It's a great analogy, OzRob.

I try to retain in my head (for want of anywhere else!) a sort of 3D 'mind-map' of the things that forums like this have connected with the aetiology of AF.

And when someone comes along with a query, I try to fit them into (and evolve) the 'map'. In case anything might come of it - for them, or just to open a new avenue or insight.

So, yeah, lock and key. Only, the two things are contingent, and sort of reflexive.

In trying to match them up we inform ourselves and definition of the profile of each.

Perhaps not coincidentally, another of my interests is governance. Because I have, in a long career, become impatient with the' tick-box' approach to compliance in my field, much as I have to any sort of merely generic, unjoined-up, taxonomical solution.

Getting the taxonomy right is necessary, but not sufficient.

The breakthrough for me in my fields of interest (in applying non-linear dynamics and systems theory), was appreciating that governance is not about legislating with static prescriptions but about defining key cues and 'badges' of sustainable, viable systems.

It seems a digression, but reflexivity, 'feedback' is as common to chaos as it is to viable systems.

Ironically, is is an organic, living , model that has informed my critique in my own field. Balanced feedback loops are essential to maintenance of homostasis, anywhere.

Think of the Boulton-Watt steam governor.

And it is no coincidence, I suspect, that AF - or re-entrant tachycardia - is a prime example of a malfunctioning, living, chaotic feedback loop - just like the way an electric bell works by being inherently unstable. A sort of febrile substrate.

The problem is that, perforce, we devote more time to just 'knocking the bell off' than to understanding the underlying, governing, dynamics, or malfunction, that make it go.

Just as we too often miss the peccant elements of other system failures all around us.

And, of course, non-linear dynamics, 'chaos' teaches us, that like Franklin's 'horse-shoe nail', severe consequences can have small starts in any substrate of initial conditions.

CDreamer profile image
CDreamer

It’s an interesting concept, not sure how you would organise it? Other forums do ‘section’ posts according to interest sub-groups but I suspect that will require moderators with some advanced IT knowledge. Worth a try.

I know I had a mixture of Vagal and Adrenegic AF - the simple categorisation for me is the first is chemical whilst the second is electrically stimulated but no matter what the mechanism, they are are both AF with the same consequences.

I also believe there should be a lot more categories which would include heart structural defects induced AF - such as valve, other co-morbidities such as Thyroid dysfunction, cancer treatment induced AF, COVID induced AF etc.

All the above seem to be commonly mentioned there are cross overs but each has it’s own peculiarities and seems to respond to very different treatments so it would be advantageous for us all if categorising could inform treatments.

AF in itself is not a disease, the way I see it - more a condition resulting from a dysfunction in the bio regulatory system which controls heart’s rate and rhythm.

I don’t think that there has been nearly enough study into categorisation.

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