I am not sure if this has been discussed in the past.
The medical profession (as well as this AF Association) recognize 5 types of AF being as follows:-
First diagnosed
Paroxysmal AF
Persistent
Long-standing AF
Permanent
These are definitions of the stages of AF, not actual types of AF or causes of AF.
We all know it is very difficult to find individual causes or triggers for AF, every sufferer is different.
My question is why haven't studies been conducted to create different categories for someone that has been initially diagnosed with AF?
Cardiologist Sanja Gupta from York Cardiology recognizes Vagal AF and states that if you have AF predominantly while in bed or after a big meal then that points to Vagal AF.
In the world of plants we have what are called 'KEYS' to identify plants, each question in the 'KEYS' asks about things like flower color, stamen type, leaf structure etc. The 'KEYS' eliminates a range of plants until you finally are left with the identity of the actual plant.
If AF had some basic 'KEYS' when I was diagnosed I would have learnt that I had Vagal AF back then instead of 14 months later via my own research. Having Vagal AF means you can do a lot to reduce your AF burden and hopefully control it.
Is this something we as AF sufferers should start developing for all newly diagnosed people?
Be good to hear some comments from recently diagnosed people as well as people with long standing AF.
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OzRob
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OzRob, for the correct classification of AF, it would be necessary to know the real cause of it. MDs do not know it, so make mistakes. For instance, they like to diagnose people with "lone AF". It is the best proof, that they do not know... There is no "lone AF", meaning that there is no cause for it (no high BP or anything else, that could be blamed for the onset of AF). Does it mean that there really is no cause!? No! The cause is always the same, changing only in intensity and duration. That is why AF has numerous faces to show.
Sure, but why do the majority of the profession ignore Vagal AF?
I went to see a new EP about 2 months ago who did not believe that Vagal AF existed. I think he did not need to keep up with younger cardiologists knowledge as he was too busy charging people like me $300 for a 15 minute appointment...
There is no Vagal AF... Sorry to say it, but there is not. Like there is no cure for AF... sorry to say it also... After 15 years long research, I know what I am talking about.
Vagal AF usually always occurs at night when going to bed. Vagal Manouvers work for some to stop the AF as soon as it starts. Some people eat early so they have less food in the digestive system. If you search on the forum for Vagal AF you will learn more about it.
I’ve met many doctors who do recognise it but sadly few who can help with what to do. Yes it has been discussed many times and I have seen some movement but unfortunately not fast enough. I believe this doctor spoke at the Surrey AF Support group - richardbogle.com/blog/vagal...
More than just vagal AF - ANS dysfunction or Dysautomnia is now being taken very seriously in relation to arrythmias - unfortunately no treatments
I can understand that, but surely people would like to know if they have any particular condition/disease that sets off AF.
If those conditions can be identified then why are people not being diagnosed for that? Even if today it has no cure? Are these conditions too difficult to diagnose? I know that Vagal AF is easy to diagnose.
If this forum has 30,000 members I am sure at least some would like to know what AF condition they have.
I recall when I went to a cardiologist who diagnosed me with AF, he suggested alcohol was probably the cause, I think that was his standard diagnosis.
I guess I am just a little more inquisitive than most!
Completely agree and exactly what Dr Bogle quoted - travelled that road for the last 20 years and found amazing conditions, known and proved treatments which gain no ground in mainstream medicine - the most notable being nutrition, breathing, sleeping, rest and exercise.
I found medicine is like modern political systems - polarised and especially in US.
Someone on this forum once told me the reason for this lack of curiosity - follow the money - absolutely right. We have all gotten in to such bad habits and mindsets and go seeking instant gratification of ‘cure’ through drugs and interventions which make a lot of money for pharmaceuticals and in US - some medics - whilst practical low cost adjustments to lifestyle make little or no money. Very few sufferers are prepared to go all out and adopt the Wim Hoff methodology but you can look for self support and what can works for you but it takes time. Most people however, are too invested in want they want to do rather than what they need to do, including myself.
There are good people doing great stuff but you won’t find them in mainstream medicine or if you do - most do it very quietly because they fear for their careers.
List of books you might find of interest
Breath - James Nestor
The Oxygen Advantage - Patrick McKeown
The AFib Cure - Dr John Day
AF and autonomic dysfunction is well known about
They have all helped me along with dual trained Lifestyle Doctors/Cardiologists.
Just an observation, the argument that some treatments make no money because they are lifestyle interventions doesn’t make any sense in countries with a universal health care system, which is basically most countries with the exception of the USA and Eritrea.
Interventions that cost very little are perfect in universal health care countries as governments are always trying to save money.
You are discounting the power of the pharmaceutical and medical devices industry to lobby and to "capture" regulatory bodies such as FDA, EMA, MHRA etc . Most European countries have a socialised medicine system. This does not stop millions being spent each year by lobbyists in Brussels. There is also the influence by KOLs who receive Pharma money in medical education. There is very little training of doctors in nutrition or other lifestyle interventions. Under capitalism medicine developed in a certain direction. There is interesting stuff about how the Flexner report in 1910 in the USA influenced the development of western medicine and particularly medical education , forbidding the teaching of herbalism in medical schools in favour of newly emerging pharmaceuticals that were made by chemical companies. Countries that were communist and had less resources to spend on medical care often were more advanced in using cheaper interventions - like phage therapy. The Russians had research on the benefits of vit D in some cancer prevention ages ago having observed that women who sunbathed topless had less breast cancer. TCM is still used in China alongside western medicine and there are large parts of rural China where little else is available. The interest that there was in the West at the turn of the last century in heliotherapy disappeared with the advent of antibiotics. Look at how the UK governments have had virtually zero success in curbing the power of food advertisers to push junk food . Perhaps it will take the complete collapse of healthcare systems under the weight of increasing costs for a radical reappraisal .
"Look at how the UK governments have had virtually zero success in curbing the power of food advertisers to push junk food . Perhaps it will take the complete collapse of healthcare systems under the weight of increasing costs for a radical reappraisal ."
Medical schools are aware the knowledge on nutrition isn’t great, which is why there are nutritionists.
The same applies to other more modern sciences, like genetics, immunology and biochemistry, the specialists the medics ask are not other doctors, but scientists.
Doctors can no longer know everything, it’s impossible.
Although a lack of nutrition knowledge is an identified barrier to nutrition counselling [15], knowledge transfer alone is not sufficient to modify eating behaviours [35]. Dietician-patient interactions that heavily rely on information-giving have been shown to lead to high patient drop-out in comparison to motivational counselling approaches [36], and the majority of successful interventional weight loss trials have included behavioural modification as part of the intervention arm [37,38]. It is therefore essential that doctors are assessed on, and supported in achieving, skill-based competencies to engage with behavioural motivational counselling techniques. In this study, however, ‘obesity’ objectives across curriculums had the lowest proportion of behaviour- and skill-based outcomes, and the highest proportion of knowledge-based outcomes—a concerning finding given evidence that didactic, knowledge-based obesity interventions are less effective than motivational behaviour modification techniques [39].
There was a post recently that exemplified for me one of the big problems about our hospitals regarding nutrition. One of our members was in A&E for a none related AF problem - they were there all day so needed feeding. The ONLY food offered were vending machine high sugar/high salt snacks. They went home in AF and wondered why having consumed only sugary chocolate bars.
The food industry has a lot to answer for our bad health and governments need to step up to the mark regarding regulation.
I assume you have been into a hospital canteen or had to eat hospital food? I have numerous anecdotes on the subject.
If hospitals cannot provide simple nutritious food to offer patients then IMHO they are wasting money on research and should consider far more on providing simple well cooked meals made on the premises from fresh produce which might just go a long way to offering an example - after hospitals have a captive audience!
Just like to clarify that nutritionists and dieticians are different trainings and I have yet to meet an NHS nutritionist, lots of dieticians but you only get a consult if you need a specific diet eg; for kidney disease.
I did not suggest that herbal medicine should replace allopathic. My reply was to point out how under a system of medicine that evolved to suit capitalism your suggestion of cheap interventions being perfect in universal health care does not hold water. As for cruelty to animals I hardly think that allopathic medicine can be excused of this. The supplement industry might well lobby but to suggest they have anywhere near the clout of Pharma is ludicrous. Perhaps also you might cite the trials in which supplement manufacturers have been fined billions of dollars for false claims about their products or bribing doctors or deliberately hiding negative effects leading to patient deaths.
Auriculaire, with ref. to your comments on heliotherapy disappearing since antibiotics emerged, do you happen to be following the recent interest in red light and near-infrared light therapies? I had intense pain in my knees from an inflammatory attack and, becoming desperate, decided to try red light therapy, having read some studies on its success with pain. I bought a cheap "belt" online, laid it on my knees 2-3 times a day for 20 minute "treatments". To my amazement, on Day 4 I woke up with almost no pain, and was able to walk, unlike the days preceding. Essentially, the mechanism is said to be stimulation of the mitochondria to enhance production of ATP. Interesting, eh? Cheers, Diane S.
Check out DGYao red light therapy devices online, and you will see a huge line of belts and other fitted items lined with the red & near-infrared lights, and some hand-held devices. That is only one manufacturer. One of the oldest companies, I believe, is Platinumtherapylights.com. They are using 5 different wavelengths of light that penetrate the body at different depths. I am currently using one of theirs to see if it has an influence on my AF, or on ulcerative colitis which we have found is triggering my vagal AF. See also "photobiomodulation", & this article w/ some further ref's: pubmed.ncbi.nlm.nih.gov/334... I understand it has been used effectively for 20+ years by dermatologists and orthopedic practices, but now the applications are expanding.
Yes we know what AF is but we do not know why. Yes we know that it is a rogue electrical impulse which causes the left atrium to pulsate wildly without actaully pumping much blood but we don't know why that happens.
Thirty or forty years ago it was considered just part of growing old and seldom treated so we have come quite a long way. AF Association through pressure on government here in UK, aided no doubt by some MPs with AF, managed to have the treatment of AF written into planning protocols. The problem is that there are so many reasons a person may develop AF and few are actual causes, the use of NSAIDs excepted of course .
A class of people most likely to get AF are middle aged athletes who participate in endurance sports along with fast jet pilots (fighting g force) . The reason is the same, over working the heart. Do you then want another definition, say " self induced excercise AF" added to the mix? The number one reason for young people (teenagers through early twenties) to have AF is binge drinking. "Trainee alcoholic induced AF"? Fortunately for this class abstenance is usually a cure. A third class can be recipients of by pass operations as we know, due no doubt to disturbance of the natural pathways by the new grafted veins. My late brotherin law fell into this category.
So yes you could, if you so wished, create lots of new names to describe AF but in almost all cases the treatment is the same and as we know, since there is no cure it will be for qualiity of life. What I do feel is important is that every newly diagnosed patient be encouraged to address their life style issues and take responsibility for themsleves and their treatment. It is not after all a disease but a condition so chronic rather than life threatening.
AF went from my biggest worry to taken a second seat to my coronary artery disease. Did you brother in law have a bypass then develop AF Bob ? I know now I have both conditions one boosts the other with worse outcomes.
Yes he was fine before bypass op. This is very common as I said. He was in his eighties and managing the car park at Essex Cricket Ground when taken by a massive heart attack so not AF related. Even managed to hold up the game whilst an air ambulance landed.
Wow must of had some decent fitness. I’m still going to pursue mini maze and clip. I think I will need a stent at some point in my not so distant future and if I can reduce my chance of stroke and potential to be on anticoagulant and anti platelets at the same time it’s worth it. Apparently they can even stent at same time if needed. Scary.
Yes, I do agree with you. However, as Vagal AF is now being recognized by some of the medical profession as something that can be diagnosed should we start to think that it deserves to be labeled officially? I am sure in 20 years time things will have progressed where they will have discovered more about AF.
Let's say that 200,000 people today suffer from vagal AF in the world, are they to be medicated upon diagnosis because they have been lumped in with everyone else diagnosed as a stage of AF instead of Vagal AF?
This is how I was diagnosed, as a stage of Af and I feel it was wrong due to the lack of understanding by the cardiologist who had zero knowledge of Vagal AF.
there is one thoracic surgeon in the US who believes that “lone” AFib is vagal related and he performs a surgical MiniMaze procedure that addresses vagal AFib. He has a very high success rate and long term. But most doctors do not believe in vagal AFib.
Go to the Wolf Mini Maze website and maybe also check out posts by Mummyluv to see how this is done. Two similar methods of tackling long standing persistent AF but probably not so relevant for a procedure to tackle paroxysmal vagal mediated AF.
Dr Wolf categorically states that it is the vagus nerve conducting the AF problem. Extending this theory, would be to say that ALL AF is conducted by the vagus nerve and that the type of symptoms you get would require labelling in a different way.
yes it is. A complete ring around the outside of the heart is ablated to block the rogue signals from the ganglionic plexi. with a special tool specifically developed for this If you want to read more about it, you can go to Wolfminimaze.com. It is all explained there. Dr Wolf believes lone AFib (no other heart issues) is a nerve problem not a muscle problem. He has a very high long term success rate.
I think I had clockwork AF. Never knew what started it but it went on for many hours and then suddenly stopped. My heart had a rest for a couple of days then off it went again.
Fortunately my ablation was done two days after the previous episode so was all ready to spark up and have its rogue signals zapped.
I do regret the fact that forum members say that there is no cure for AF. For me my ablation has been a cure. If, in the future, I push my heart too hard and get AF, it will be caused by new rogue signals not the old ones.
I do feel that if I allow myself to get overwhelmed by events and try to push myself too far then I risk it starting up again. So these days nothing worries me too much.
Physalis, unfortunately the problem with the ‘cure’ of ablation, is they will only offer them to those that are bad enough…for someone in my situation with infrequent episodes it’s not an option ( I’ve been told that) and I do understand, but I have afib constantly in the back of my mind that it’s there, lurking, so I just have to manage the situation. There is currently no magic cure for someone like me. But that’s an entirely different story and thread for another day…
Quite honestly, I didn't really think I was bad enough because I was asymptomatic so I was delighted that they said I could have it done. And I didn't need to wait long at all.
The same is true of the problem with my hips. I didn't think I would be able to have the hip operation because I had no pain. The surgeon said it was bone on bone but I'm sure there are a lot more people who are more deserving than me.
I was due to have the second one done tomorrow but it was cancelled because I might have to stay in longer and they close on Thursday.
Yes, I think EPs do vary a bit across the country. I think you were lucky and good news too that it seems to be a cure for you. Ablation is a cure for many people, I know. I’m fortunate too, I know, that my episodes are currently very seldom, but it still plays heavily on my mind and anxiety and holds me back in life. Even though I think I know what causes it, it is still a heavy ‘burden’ to me and there’s nothing I can do that will make it leave my life altogether. So, I’m hoping that one day they might find something, you never know - ever hopeful!
Good luck for when you get your next hip op too…hopefully it’ll come through again soon.
You need to learn to sort out your anxiety about afib because it is really this that is causing the burden rather than the afib itself. Unlike most people here I was not that worried when afib was first diagnosed because I was sure that it had been provoked by exposure to an FQ antibiotic and assumed ( wrongly) that as long as I avoided further exposure it would not reoccur. I was far more agitated about stopping the drugs I had been given as they were making me feel awful. My next attack was more than 18 months later and was short lived, practically asymptomatic and at the time I did not really register it. It did happen at the time that the formulation for Levothyrox was changed here in France and lots of people were getting problems with that. It was in Jan 2020 that my afib took a turn for the worse with 7 episodes that year and in 2021 and 9 so far this year. Twice this year it has happened while we have been on holiday . I have come to realise that stress is a factor as well as some other physical triggers and that worrying about the afib as well just makes it worse. I have become more accepting and the attacks have become shorter and less symptomatic. I have stopped using the Kardia during attacks and feel this has helped. I feel that in stopping being anxious about it the "burden" has lessened a lot. It is far less of a nuisance than the daily pain I get from my skeletal problems. I am a fairly anxious person in general and a pessimist too so it has not been easy to " accept " the afib and if I was as badly symptomatic as some people here I am sure it would be a lot more difficult ,but I am sure that the anxiety itself begets afib so that needs to be worked on as well as physical triggers.
Thankyou - and yes, I know you are right. A lot of people say the same, It’s interesting to hear your story too. I know how fortunate I am to have this affliction mildly at the moment, but it’s the future that plays on my mind. It is what it is and all I can do is try and carry on doing what I’m doing in keeping the episodes away. I’ve had anxiety counselling earlier this year etc and it did help, but it still bubbles under the surface. Perhaps in time I will accept it. I have always been a worrier, since a child, so it’s a difficult thing to overcome. I’ll work on it!
I totally agree with you in that ‘vagal’ Afib isn’t recognised by a majority of medics. I know I have a type of ‘vagal’ Afib as my episodes are connected to my digestive system - my episodes have always been in the evening and during the early hours.
The cardiologist and EP I’ve seen, just shake their heads when I ask about vagal AF, so I feel I’m on my own in how I deal with managing any triggers. I don’t think they’re interested in categories of Afib. Afib is just Afib to them and I can see that is probably how they have to view it - dealing with the effects of someone who suffers with it, rather than what causes it. All I can do is try and control what I eat and when, to the best of my ability and it does seem to work for me in that I’ve had one episode only this year (touchwood🤞) We are always told that lifestyle changes go a long way to help with Afib of any ‘type’ and it is true. That’s all I think we can do - and hope for a magical ‘cure’ one day.
Wouldn't it be great for a newly diagnosed AF patient to be able to discover immediately that they too have the same AF as you have?
I don't think it would be too difficult for us as members of this forum to label our own take on the AF that we have so it falls in a specific category. This is not rocket science...
G'day OzRob,I wasn't gonna comment because in my view this whole rotten AF thingy is like a never ending story without a true end.
My diagnosis was in early January 2010. No warning. Aged 65. Until this point my life I experienced a fairly healthy life style but had the pleasure of an early childhood in northern NSW. My adult years were in Sydney and I enjoyed the outdoor life. My life, health wise was trouble free. Then, in my early to mid 30's I began to experience digestive issues which were later more finely diagnosed as gall bladder issues. This led to my visiting an analysis of food and ditching certain food stuffs. Then it all settled for another 30 years.
2007 saw me prescribed statins and Ramipril. The party bag of drugs grew bigger until 2010.
The day of AF diagnosis started well enough, couldn't go to work due to snowfall. Spent 20 or so minutes in a low lounge chair bent over putting papers through a shredder.. Shortly after, felt unwell like going down with flu. Later over a period of 5 hours or so my BP dropped from 136/80 ish to 76/50.
Phoned GP who saw me immediately and sent me to A&E who diagnosed AF with a HR clocked at 156. Took around 9 hours to get to this stage. Brilliant.
Had no idea what AF was. Got online and discovered AFA and the original forum hosted by Yahoo. Over a period of time I met BobD and MarkS who introduced me to the concept of Vagal AF. From this came more research and education and an ongoing understanding of AF.
Then came digestive issues and consultations with Nutritionists, food plans and, along with medication came a highly controlled AF. No cardioversion, no ablation. I have not had, nor do I intend to have any relationship with a cardiologist or EP unless things worsen as I age further.
So, for me its a case of calm the vagal nerve, calm the heart electronics. TBH, I don't regard that I have Vagal AF. I do have a dysfunctional Vagal Nerve which manifests itself in my heart electronics and with it the label, AF as a result of physical activities or consuming certain foods. Not affected by any drink or ice cream.
Your quote:- "I don't regard that I have Vagal AF. I do have a dysfunctional Vagal Nerve which manifests itself in my heart electronics and with it the label, AF."
Perfectly said, I agree the broad label 'Vagal AF' may be completely wrong. The vagal nerve is the conduit for another ailment to mess with our electronics.
Identifying the ailment is the first priority, then to do something about it if that is possible.
I've noticed in this forum that we may all have or have had AF but there is an enormous amount of difference in the symptoms. I assume this is because we all have slight differences in our hearts.
Some hearts have deformities, diseases and this will affect their versions of AF. Add on lifestyle and temperament and you have an infinite number of causes.
Which is exactly why labels are so often inappropriate .
If you have a cold you get a runny nose and a slight temperature. Might even get a cough as well. If you get shingles you have a painful rash. Both easily seen and noticed but AF is different for everybody and trying to label it merely confuses the issue. If I were able to accurately describe my form of AF many people here would not recognise it. Possibly up to a quarter of people with AF don't even know until the stroke hits them or it is picked up during an unconnected health check. I did some random ecgs a few years ago at two local surgeries and out of forty nine patients found seven new cases.
Maybe in another forty years we may understand why people get it but in the mean time we must accept that if you have AF you will have AF regardless of what you call it. (Everybody on the planet gets ectopic beats but we still don't know why so don't hold your breath.)
It would indeed OzRob, but you and I know that would be too easy for them and I think there would always be exceptions or ‘ ifs and buts’ it’s not always clear cut and that might be the problem.
It would be interesting to talk to a cardiologist or EP who's developed AF, and whether their approach or opinions as to causes or treatments has changed. Nothing beats experience with understanding something you are trained in.
There are a few out there. We had an adress from one such at the AFA Patient's Day probably ten years ago and he did know what it felt like. I remember him commenting that he was doing an ablation on a patient one day when he went into AF himself. A bit distracting but as for many of us you carry on regardless. Sadly I can't recall his name.
I never had any ideas about keys or triggers for my 16 afib episodes in two years. I do have two outstanding cardiologists, one an EP. I'm about 6 weeks out now from 3rd ablation and a pacemaker, and this is the most normal my heart has been in two years.
I definitely identify with this. I also have a 6cm sliding hiatal hernia which two cardiologists have told me can affect AF, despite my GP saying she had never heard of it. For the most part, I am AF free, following two ablations but if it is going to kick off, its usually when I am lying down in bed or eaten too late.
There are actually science papers on this! Links between AF and HH. But tbf my EP said to me - there are at least as many people with AF who don't have HH so you can't identify it as a 'cause'. Is there a link? I have a sliding HH and my experience is that yes, there IS a link
i agree with the theory of food being a trigger, many of the episodes i get are after a meal or when i am asleep especially if i had eaten late in the day......The first big one i had was after i had been out for a beer ( or two) and then had something to eat when i got home (it seems so stupid now), i ended up in a CDU ward for the night......nearly three years ago......the rest is history, meds and a bit of stress...........but no alcohol or late eating🙃
I have to broaden the discussion a bit first....I have learnt, with huge surprise and regret, from the Covid mRNA vaccine debate that most doctors are now captured and work within tightly controlled silos, which are fed information and 'drug solutions' by Big Pharma financed research. Neither can you turn to mainstream media & medical journals for anything but a very occasional non-influential non-drug study - they also don't wish to alienate the hand that feeds them. So in short accept money, not the advance in patient wellbeing, leads the field.
You have to dig to find doctors /Alternative Practitioners that will present the full picture.
If you accept this, it actually helps as you then realise you have to do a lot more yourself in terms of research, reading personal experiences on this Forum, lifestyle changes and finding other professional advice. It is out there and those involved are mostly highly talented passionate people oozing goodwill!
Turning towards your point.....I believe you also have to accept that as well as many causes of AF there are also many 'cures' for AF, hence cardiologists/EPs, as well as others, have various tools in their box to try and I believe do play an important part particularly for the more serious AF cases.
So to sum up....yes you may have vagal AF or as John says 'a dysfunctional Vagus Nerve' but there is more than likely other contributory causes. If such an assessment is correct there is insufficient upside for mainstream medicine to create the new pathway you wish for.
On my journey, I have embraced all 3, drugs, lifestyle changes & Alternative Practitioner advice and to date it has worked.
Yes, agree with all that and I think I am on a similar journey as you in regards to my AF.
I am amazed as to how much I now know about my own AF since I discovered that whatever condition I have that it is that I have uses my vagal nerve as a conduit to bring on AF.
I think my main concern is that people with the type of AF that I have are being medicated due to the medical ignorance about vagally mediated AF.
If I was medicated with the AF is controlled i am not too sure I would be making many lifestyle changes as the medication would be masking the actual problem.
Yes I think so, most of us AFers still need to see medication as a cover-up not a cure.
I am pretty convinced I have vagally mediated AF and so after accepting emergency medication (Flecainide) to stop 2 debilitating episodes per week & diagnosed as Lone AF, I have worked tirelessly (and still do) on lifestyle changes.
I am not going to tempt fate by saying I have found 'a cure for me as an individual' but what I have done undisputedly is given me 5+ years of excellent energy and QOL with no further episodes.
What you have achieved should be documented, in 12 months time this post will be buried unless you search for it.
You and I are two of perhaps hundreds, or thousands of people with vagally mediated AF on this forum.
If all vagally mediated AF people on this forum could document how they are dealing with AF so newbies could easily find that information it would save months in diagnosis of vagal mediated AF.
I haven't done it but a search here under 'Vagus Nerve' or 'Vagally mediated' or similar should bring up a lot of suggestions as the matter has been brought up quite a lot since I joined.
My short advice to any (incl VM) Lone AF newbies......... get you mental, physical (in particular gastric) & spiritual health up to a hitherto unimagined high level. I can assure them such changes do not ruin your life, quite the opposite!
Thanks for your post. I think formerly they don't recognise it, perhaps because there's no clear causality of AF. But informally and in practice I think some do. So my GP pretty much laughed his head off when I spoke to him about vagal AF. In fact, I don't have it as I later realised. Definitely adrogrenically mediated it my case. But my Arrythmia Nurse recognises vagal AF and advises patients on dealing with it because we had a conversation about it. We just have to keep banging the drum - only by studying us, the patients, will they get to find out more about AF.
“for me its a case of calm the vagal nerve, calm the heart electronics. TBH, I don't regard that I have Vagal AF. I do have a dysfunctional Vagal Nerve which manifests itself in my heart electronics and with it the label, AF as a result of physical activities or consuming certain foods.”
I have had AF for more than 10 years. From the, start I identified certain triggers. Gluten, alcohol, caffeine most common. As time went on I was still getting bouts of AF.
I had a lot of digestive issues about 3 years ago, gastritis and a gastric ulcer caused by Rivaroxaban. I also have many intolerances to various medication. These will also cause an episode of AF.
This year, I have identified an intolerance to both dairy and soya. Since then I have only had 1 episode.
Quite a difficult diet avoiding gluten, dairy and soya but I manage easily at home. Not quite so easy going out. I also avoid alcohol, caffeine, aspartame and certain fillers in tablets.
So yes I believe that my AF is caused by aggravating the vagal nerve. Keep that happy and my AF is controlled.
Very interesting reading all the reply’s . I was only diagnosed with AF 2 months ago & still coming to terms with it all . My diagnosis was “ Lone AF” then on some notes said PAF … but when does PAF become persistent AF as I still get significant bouts of AF throughout the day .
Thought it was vaso vagal but those original triggers have been stopped & now just random AF no matter what I do .
Unfortunately had a rather disappointing appointment with the arrhythmia nurse last week , I had many questions she couldn’t answer & clearly hadn’t read my notes before my appointment. She said she was surprised I was having so many episodes & how did I know it was AF & not random “ bunched up” ectopics !
I explained that I certainly know it’s AF …. as we all do , plus the diltiazem controls rate not rhythm … so I wasn’t surprised I still had it !! So she wants a 48hr tape!! I was in CCU for days on telemetry so they already have evidence.
So I’m very confused now , don’t know what I’ve got , but whatever it is it’s horrible, have gone back to work now and doing a lot of deep breathing to get through it .
Still awaiting CT cardiac scan to check my vessels,but that was ordered on nhs by private cardiologist as can’t afford the scan privately …
I’m 55, healthy, not overweight, no alcohol or “treats “ for last 2 months … who knows what’s going on ! I was certainly never an athlete or had high bp … but have LAE …. Confused 😕
You have AF so you will have AF. Sorry that is what happens. Try not to focus on what it is. You are an individual and so is your AF. Learn as you go and as Vulcans say Live Long and Prosper.
You mentioned a quote from the nurse "She said she was surprised I was having so many episodes & how did I know it was AF & not random “ bunched up” ectopics !"
What is interesting about this is that I also thought I had AF a lot when in fact it was PVC's and Pac's. I only learnt this after using a wearable monitor to track my heart.
You may be interested in another of my posts exploring the use of these wearable monitors and tracking AF plus other ectopics over time with reporting of foods eaten etc.
Thank you for your reply, very interesting. What are PVC’s and PAC’s …. ? Is the treatment the same as AF or different? Do you know if you can have a combination of that & AF ?
They are usually considered benign and therefore not treated unless sustained and very frequent and you become symptomatic.
You can often suffer from PACs & PVCs prior to or after converting from AF to NSR and following ablations it seems many people have this, I certainly did.
You are very early steps in your AF journey and there will be many twists and turns along the way for sure, but know others have trod that path before you and we are here to help.
Do you have your own way of recording such as a wearable or mobile ECG monitor? It can help gather evidence for your medical team but some people have found that it can also increase anxiety as you can become a bit obsessive and get it out for every felt missed or extra beat.
Ah I see, thank very much for this , now I understand further 48hr tape , however the telemetry & ambulance all have ecg showing AF … plus I can certainly feel it .
I have thought about getting a monitor or Kardia thing as recommended by the forum . Once my fear of it all has settled down. My Apple Watch has HR on but is an older one so no rhythm function. When I have the AF bouts it can’t get a reading , only once settled.
The first couple of years post diagnosis are no fun! You are at any early stage, so my advice with the benefit of 8 years hindsight is learn fast, adjust your life to allow this (as there is nothing more important), persevere and get those episodes stopped completely asap, as the heart can easily adopt bad habits but equally the longer you keep in NSR the less likely those bad habits will re-emerge. Best wishes.
I now wish I just had AF. I have now been diagnosed with coronary artery disease. Hopefully you CT will be clear and they will get control of your AF. It’s a shame the nhs is such a state and people are having to wait so long for scans or even advice. My diagnosis of heart disease came in form of a letter with zero advice just a direction of what drugs I need! Good luck with your CT.
Yes , I read your post so am mindful that there is a possibility the CT might not be what I’m hoping ! I (as a rookie) was assuming it was just a quick pre flecanide check , but am preparing for it mentally to be not so straight forward.
I rang the hospital this afternoon after a particularly rubbish AF day at work , to chase the CT , letter in the post for mid January, so that’s something.
All the very best Dadtoalad, having thought I was turning a corner, returning to work has been more of a challenge than I’d anticipated. I’m trying to be level headed & normal but this AF thing has other plans… a very teary & frustrating day ! I’ll try again tomorrow.
it’s also extremely likely your CT angiogram will be absolutely clear. I have a strong family history of heart disease and was probably kidding myself thinking I’d be in the clear. One thing I’ve learnt as someone who suffers from health anxiety and research’s everything is that everyone’s different.
But hang in there AF can be lived with as you’ve probably learnt from looking into it. I reckon I’ve had persistent AF for years before diagnosis. I’m assuming your LAE is from the AF. It’s tough because with the NHS they tell you stuff in a letter without explaining anything. A heart foundation nurse told me a few years ago there would be an explanation from a consultant and now she says she gets calls every day from people who received life changing diagnosis via letter or email.
Anyways good luck with your CT results. As I’ve been told by the many legends on this forum whatever it is it’s better to know than not know.
Sure we will both be around this forum for while !
Thank you for this. All the very best for Christmas, definitely I’m turning out to be a regular on this forum , hoping one day I’ll be as wise & calm as the other more experienced AF ers than me .
also I’m a totally scared person ! Af diagnosis freaked me out for weeks … just as I got used to it I got a new worse one. So i total get the anxious people on here. And I’m damn well thankful for the advice of the brave and calm !
Yup, I get very scared too , so when I first felt my heart was going really crazy I took myself to A&E and sat quietly drinking water & thinking it was anxiety. However, when I saw the triage nurse my HR was 280 & apparently I didn’t look too great , and all hell broke loose as I was rushed into resus ! Subsequent episodes I’ve taken the ‘ blue light ‘ route ….
Trying so hard to normalise it all and ignore my anxiety, as well as recognising my new normal , I know exactly how you feel.
I’m eternally grateful to the great wise words of everyone on this forum who have been kind & not terrified the life out of me .
crikey 280 bpm certainly isn’t fun. I’m sure the process of getting more used to heart issues starts to take the daily anxiety out a bit or at least that’s what I’m hoping. Totally agree this forum has been great for getting my fear back in order.
In 2000 I was diagnosed, by an EP, with "vagally-mediated atrial fibrillation." Three ablations and 22 years later I still have it, by now mostly at night or after a "big" meal. But that EP left the profession entirely, and every other one I've had just looks blank at the mention of "vagal." Hang in there, everyone.
This was in the San Francisco, CA area (Berkeley, actually). I should also have mentioned that since my third ablation in 2015 I have been on Tikosyn (Dofetilide) with no evident ill effects; it probably has helped keep my AFib more tame than it was in past years (can't prove that, of course).
Thanks for triggering an interesting discussion. I would make a couple of observations based on my own experience;
Firstly, I had Ulcerative Colitis for many years and subsequently AF, I was told there is a correlation between the two problems. Certainly when my UC became worse then my AF also became more frequent. I now have a stoma and when I had problems with that then my AF became worse also. There are clearly many triggers for AF and it varies greatly between people . For me AF is related to the stress the body is under, whether mental or physical. This could be due to over exercise in super fit athletes (definitely not me!), too much alcohol (again not me, haven't touched it for many years), too much weight or incorrect foods (again not me). It doesn't matter where or how the stress is caused, it can trigger AF in those with that tendency (perhaps genetically susceptible. There will be many ways of reducing that stress, some medical, some lifestyle.
Secondly, we need to be realistic in our expectations of doctors, whether GPs or consultant EPs. Their job is NOT to find out WHY someone has AF, they are paid and expected to fix the patient as soon as possible. Maybe a PhD student somewhere may take an interest but our medical systems (everywhere) just want us fixed and out of the system.
Personally I don't see any benefit in having different labels for different types of AF. Of course I respect your different view.
Interesting thread! I have had vagal nerve induced AF (comes only after I wake up and stand up) for 2 years - and my husband is a retired cardiologist. He’s consulted on my behalf with 3 cardiologists and together, we’ve also seen 2 electrophysiologists. Including him, that’s 6 opinions.
They all say the only treatments they know about for vagal AF are the same treatments as for nonvagal. But in 10 years that could change.
To be sure, most, if not all funding for medical research comes from pharmaceutical companies. I don’t think most doctors are in cahoots with pharmaceutical companies, but our institutions and systems now operate that way.
Although I have an a-fib episode “only” about once a month for several hours, I decided to have an ablation 2 weeks from now in order to get on with life. My symptoms are so debilitating that even a short episode wipes me out for two days. And medicinal side effects are nasty!
I have to admit to a bit of frustration in reading about lifestyle triggers, since I have never been overweight, maintain good nutrition, have exercised moderately throughout my life, never eat a lot in the evening, and have abstained for two years from alcohol and caffeine. I do lessen the episodes by getting up gradually from bed. I’m also spiritually at peace. (Is it OK to mention God in this group?🤓)
However, I have always been physically, psychologically, and in other ways, overly hypersensitive. So I’m in a near constant state of overstimulation or adrenaline stress to withstand sounds, sights, emotions, etc. around me that others don’t notice or aren’t bothered by.
To all of you with more experience than me and who have studied vagal AF, can you suggest any online links that might be useful? Maybe I should cancel the ablation, though the doctors say I’m a very good candidate for it? Thanks in advance. Happy holidays!
The only online suggestion would be to watch the videos of the York cardiologist Sanja Gupta. I am the opposite to you, if I lie down it can bring on AF, and if I sit up it goes away.
Usually a lurker here, but on this topic a few things quickly (from a now 61-year old male (CHADS zero) who had VMPAF for 19 yrs up until index PVI ablation (Bordeaux) in 2018 (touch up redo procedure (Bordeaux) in 2 weeks time as for the last few weeks I have a nuisance (thankfully not particularly symptomatic) atrial tachycardia - likely from partial PV reconnection - at present).
1. Vagally mediated AF (nocturnal , bending over, after large meals, freezing cold drinks) is typically lone/idiopathic - i.e. occurs in the absence of other co-morbitities. (It's more often adrenergically mediated PAF That 'keeps bad company' as it were.) VMAF typically middle-aged males and AMAF typically older individuals of both sexes.
2. VMAF typically takes a lot longer to become persistent/permanent than does adrenergically mediated AF.
3. As a broad generalisation, beta blockers are contra-indicated for VMAFrs. This being for fairly obvious reasons.
Google 'Coumel vagal' and check out the first half a dozen hits for starters.
To keep it at bay, I get up very slowly, taking 3 minutes to sit up in bed before standing. Rather annoying in the middle of the night for potty runs. Also I started Flecainide (which keeps me nauseated 24/7). But I’m opting for an ablation because of the life disruption and nausea.
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