Is there any success story that people had truly cured their afib?

[li17]

Maybe it's not realistic, but seven months into this nasty journey, I'm still keeping a little though tiny hope that afib could be cured if you can get to the bottom of it and correct the root cause. However, is there any success story about a true cure? It is said that there are about 30 million people worldwide are affected by afib, but in all the support forums and groups, I see the largest number of members is about 10 thousand, so the majority of afib patients are not on these forums/groups. Could they have cured their afib so no bother to come to these forums/groups? Or something else?

[Hidden]

Hi there li17,

I'm not interested in the statistics you provide in your post, be they world wide, nationally or wherever. I'm interested in me !

Personally, based on 8 years of forum membership and the same amount of time with the diagnosis of paroxysmal AF, I don't believe AF can be cured regardless of treatments available.

In the beginning I was diagnosed and treatment started within 9 hours of onset, the onset being triggered by a postural issue. Much later I identified further onsets being related to food I'd eaten. I consulted a Nutritionist and went on a course of treatment, which is ongoing and will continue to be so always.

The diet has given me nearly 3 years of being AF free until 15 Feb 2018 when as a result of another, different postural issue, I had an AF event occur which lasted some 4 to 5 hours and disappeared again.

I continue with my medications and diet and if I can confine pAF to once every 3 years I'll be happy. And by the way, right at the beginning I declined any thoughts of an ablation, and told my consultant that at the time.

In my case I regard a dysfunctional vagal nerve as the fundamental issue, along with the possibility of family genetics being involved too.

Onward and upward, life goes on, AF is tamed but not cured........ taming it is about as good as it gets. Cured, personally I doubt it.

[li17 in reply to Hidden]

So how often are your episodes? Do you take any anti arrhythmia drug now? And when does your afib happen mostly?

[Hidden in reply to li17]

Statistically, once every 3 years of a 5 hour duration. In other words 5 hours every 3 years.

Bisoprolol

Either as little as 2 hours after eating or as much as 6 to 8 hours after eating (food) or when bending or when sleeping on my left side (posture).

[li17 in reply to Hidden]

Wow, that's impressive! Five hours every three years is like a dream to many many afibbers. Hope yours wouldn't get more frequent over time. Did your 2nd episode come after 3 years of diagnosed or was it more frequent before your course of treatment?

[Hidden in reply to li17]

From when I was diagnosed it took about a year for the diet to take effect. Then another 3 and half to 4 yearsof dieting to reduce AF events to nil, then another 3 years AF free ( except the short burst in Feb 2018, now normal again. I was 65 when first diagnosed and am 73 now, so that tends to buck the trend. So long as AF has the dodgy vagal nerve as the issue and so long as I can keep it calm then I don't expect it to get worse. But, who knows.🙂

[CCW66 in reply to Hidden]

Please describe your diet. I am intrigued.

Trish

[Hidden in reply to CCW66]

Hi Trish,

The most significant thing I did, on Nutritionists advice, and following a course of probiotics, was to go gluten free, wheat free and oats free. Of this lot the two big time evils were gluten and oats, to a much lesser degree wheat. Apply that to all foods from say, breakfast cereal thro to English real ales ( irrespective of whether they are draught in a pub or bottled as in a supermarket). Its a question of lifting your game of label reading of a product.

Then over time I found other foods were a problem so a precis of the list is raspberries, yoghurt, nuts ( walnuts, almonds etc but not salted cashews or peanuts), onions, soft cheeses (but not hard cheeses like Edam or Cheddar), peas and runner beans ( really any pulses), baked beans, most processed meat, pork, duck, some but not all Chinese foods ( regardless as to whether they are take away or eat in). I have also gone added sugar free, for no other reason than I was diagnosed as almost pre diabetic. But it has also had many other benefits. I have also looked at the FODMAPS diet but I'm not really a fruit lover but in any event, as a well known supermarket in UK says, every little helps.

So, when my chest feels 'light as a feather' I am normal as pre AF, as a normal vagal nerve. When my chest is 'heavy' and everything is an effort I know I'm heading for a dark place where I really don't wanna be.

So for me, food aggravates the vagal nerve, whether it is inflamed or in some other way aggravated I know not. But that's it. Thing is food and diet isn't a 'one size fits all', its highly individual and very much trial and error. What works for me doesn't work for someone else .... we are all on an individual journey.

Hope that helps.

John

[CCW66 in reply to Hidden]

Hello,

Thank you for your reply. Wow! I have eliminated many of those foods but a few I still eat. This is a great help and printing your mail out so I can study at length. Finding a nutrionist that also understands the Vagal nerve/afib is a challenge.

Trish

[Hidden in reply to CCW66]

Trish, if you are in UK, go onto the BANT website, there is a facility there which will enable you to search out a Nutritionist near you and it would be a great start point to search out one who understands the vagal nerve

John

[CCW66 in reply to Hidden]

Thank you but I am in the States...south Florida. EP’s here are highly skeptical re any options other than ablations and/ or meds. Nutritionists focus on weight loss

Trish

[Alemo27 in reply to Hidden]

Hi carneuny

I totally agree with you.It is trigger for AF ,which I have found stress, weather change,some food ,alcohol ,coffee,etc.And initiated it by some body part disfunction. I am interesting how do you find or describe disfunctional vagal nerve and do you mean by postural issue.

Thanks

[Hidden in reply to Alemo27]

Hi Alemo,

How did I find out about the vagal nerve ......... well years ago through the AFA original forum somebody posted on about vagal nerve. I thought, that sounds like me. So I spent ages and ages reading and researching.

I also found that any onset of an AF event would occur after I'd eaten. I then experienced massive, massive and painful bloating, diahorrea, intestinal gurgling and burping. Once my GP had done tests to eliminate IBS and/or Coeliac Disease I consulted a nutritionist which started my diet process and over time I managed to get to the point of being AF free for nearly 3 years. Until 15 Feb 2018 when I was awoken from sleep in the early hours with my heart banging away trying to escape from my chest. I was back in AF. Lasted around 5 hours.

Now what I mean about posture is that the day I first had AF, the very beginning, I had spent some half hour or so bent over a shredding machine at home. I was seated in a low armchair, the shredding machine on the floor, lower than the chair and I was bent over.

When I was recently woken from sleep I was sleeping on my left side.

There is ever increasing amounts of anecdotal evidence to show posture bringing on an AF event in some people. Sleeping on left side is quite common, as is sitting at a table/desk at a computer..... in some people.

To understand the vagal nerve it is worth going on line and putting in the search engine - "schematic diagram of vagal nerve". Vagal meaning wandering, when you see this schematic diagram you'll understand what i mean when I say it is the bodies lifeline ... it is. It is in effect like an information superhighway between the brain and many organs, notably the heart and digestive system.

Here is one of many definitions ............ The vagal nerve is the 10th cranial nerve that connects the brain to the body ...... the longest of 12 pairs of cranial nerves (of the autonomic nervous system) that emanate from the brain ........ transmits information to or from the surface of the brain to tissues and organs elsewhere in the body. It interfaces with the parasympathetic control of heart, lungs and digestive system. Basically, without it you are dead !

Hope this helps.

John

[Alemo27 in reply to Hidden]

Hi John,

Thank you very much for a such fundamental explanation

I defenetley will follow your advice to look for "schematic diagram of vagal nerve.

I am in Canada, and the doctors have similar as in US approach to AF -medical and /or ablation.

For my understanding- Ablation- is the shutting in the dark, since the AF trigger is not identifies.Therefore, it can be left for possible treatment as a last resort.

So far, I am managing with minimum of med. only as PIP ( peel in the pocket) when needed.Usualy, when the palpitation start I take bisoprolol,and if this is not helping for half an hour,, Flecidine.

To prevent vessels blockage, the Cardiologist prescribes Abixaban twice a day and periodic check- up .

Of course, the diabet,blood pressure ,overweight, cholesterol smoking, alcohol, some food, weather and life pattern change , depression, stress,etc.- some AF trigger, and should be taking into consideration first

Inna .

[Seankevan]

My experience is different. I was diagnosed with PAF 4 years ago, aged 51, together with a 90% blockage of the LAD leading to a single stent which, happily, resolved the latter issue. Importantly I had been utterly asymtomatic with respect to either the PAF or the blockage. A year or so after the operation I noticed a racing pulse for the first time - the ‘attack’ lasted no more than, at worst, 5 minutes or so. Cue several visits to electrophysiologists over the following months, including a 24 hour and then a 7 day halter to monitor and finally, at an EP examination at St Thomas’s, a diagnosis of ‘AV node re-entrant tachycardia’ was made and, in the same procedure, a swift ablation and instant cure.

96-98% of AVNRT are successfully treated in this way and I’m delighted to say, yes: I’m ‘cured’. Personally I had always been sceptical, despite the assurances of numerous cardiology consultants and registrars, that having been ‘diagnosed’ with PAF that this was a life-time diagnosis and that, whether I was symptomatic or not, once I got to 65 and I therefore had CHADVAS score of 2 (alongside stable CVD) blood thinners would be indicated. I am convinced that the initial diagnosis of PAF was mistaken and simply part of a ‘safety first’ approach by (no disrespect intended) ‘the plumbers’; I would therefore HIGHLY recommend seeking (in fact demanding) specialist electrophysiologist advice and opinion at the outset. In short: my experience was that PAF was indeed ‘cured’. I hope this helps and the very best of luck.

[li17 in reply to Seankevan]

Sean, thanks for sharing your experience. So since the procedure you haven't had any afib episode and don't need to take any supplement or drug, right? That's awesome. I am skeptical too when the mainstream medicine says afib is not curable. As there're so many different factors, it's hard to say ALL afib is not curable.

[Bagrat]

Diagnosed 2011. Only one episode since starting flecainide 8 weeks after diagnosis with second episode. On apixaban as 73 and female.

People may be interested in reading Porges polyvagal theory. Plenty of references from Mr Google if you feel your AF is vagally mediated.

Controlled yes, cured I don't think so. My husband went into AF for a weekend 15-20 YEARS ago and converted with no treatment. AF returned May 2012 and has been in permanent AF since. I am not his keeper and he decided on no action as not symptomatic and he is heavily medicated for hypertension and post MI 2005.

[li17 in reply to Bagrat]

Thanks Bagrat! Wow, your husband's lucky! 15-20 years without recurrent is great! I personally know a friend in church had few episodes 10 years ago then nothing until now. One of my cardiologist told me he had one episode of afib 30 years ago and nothing until now. And my nutritionist told me he had one episode in 1994 and nothing yet. I really hope I can be that lucky.

Do you have any side effect from flecainide for that many years? I've had 5 episodes, my EP wanted to start daily flecainide but I've been putting it off.

[Bagrat in reply to li17]

18 months ago with my GPs help I reduced from 100mg to 50 twice a day as I got odd runs of fast heart rate and occasionally just had to sit down for 20 mins ( acute fatigue feeling.) I did struggle with anxiety though occasionally which muddies the water. Since reduction, touch wood, I have been fine and since using magnesium spray daily feel generally better all round.( I'm not advocating magnesium as it might have been lots of things just saying)

[secondtry]

Believe me, if you are like me, you don't want it cured you just want it managed down to an acceptable level like Carneuny's response above. If I thought I was cured (close as no AF for 4 years on 200mgs Flecainide a day) I would go back pretty quickly to working stressful hours, diet would change more sugar and gluten and late meals, alcohol and many more modern lifestyle traps. As I have said many times before, I regard it as a blessing (OK, a mixed one) and not as bad as say if you had a weak back and always had to be careful lifting anything heavy and lying flat for an hour a day. Positive thoughts for the weekend!

[li17 in reply to secondtry]

That's really a positive thought! I agree afib itself, if not in an episode, doesn't bring too much physical limitation. I also agree that with afib lurking in the background I don't dare to abuse my body at any degree. But the mental effect is so devastating that I literally keep thinking about it 24/7 and I've been another person since afib was diagnosed. I'm trying so hard to get back to the normal me. But the fear is always there.

Are you going to take flecainide as long as possible? Any side effect that affecting your daily life?

[Buffafly in reply to li17]

Perhaps you might think of it differently. If the 'normal you' was a very carefree careless person, then somebody who appreciates life and health and makes the most of them, takes responsibility, and can adapt and be resilient in adversity is an improvement. Why not start by following your EP's advice and taking the medication? If you have been reading up about AF you will know the more PAF you have the more you are likely to have so by not taking medication you are decreasing your chance of a 'cure'. We all hope for a miracle cure at some point in time but in the meantime many people work hard at looking after themselves, while others accept it as a 'nuisance' condition and live normally when not in AF.

It takes a while to get over the shock of a first bad episode and the grief of knowing your life has changed but after that it can, as several others have said be a blessing! It is up to you, best wishes.

[secondtry in reply to li17]

Agreed, the mental effect needs a lot of working on. All I can say is I did lots of homework and followed up with various tools: Mindfulness, positive thinking (write down the best 4 things of the day every day), reduce anxiety in other parts of life, prayer increased, new hobby taken up (playing the drums & walking basketball), more work in my smallholding and in Nature generally, evening comedy programmes only no scary stuff etc you get the picture. At the start I was borderline depression, it has got a lot lot better. Good luck.

Flecainide, I don't look very far ahead, after consultation last week with my cardiologist and with my Naturopath and with myself as to what's the most important right now, I have decided I will continue to take the same dose of Flecainide for another 6 months and then review. No side effects.

[paulalex1313]

After 26 years with Afib, 3 ablation procedures and continuing medication - 100mg Flecainide Acetate twice a day, I have been pretty well clear of symptoms for the past 18 months and I have now been signed off by my consultant. Have I been cured? I don’t believe so. I think the trigger that started my Afib was too much caffeine from 7 or 8 cups of coffee a day during the first year of my new business when I was working more that 15 hours a day. Since then I have avoid caffeinated coffee, although one cup of tea and and occasional Diet Coke don’t see, to have any adverse effects. I reckon my Afib could be triggered again, although I have no idea what might trigger it. I will just continue enjoy my Afib- free life and hope the dreaded Afib does not return to blight my life.

[BobD Volunteer]

Cure is always an emotive word and here are plenty of posts even earlier this week about the subject which you can scroll through.

For my part,. after three ablations. the last in 2008 I have been AF free since, BUT I do still have other arrhythmias and as I always caution, ANY and ALL treatment is only ever about improving quality of life (QOL) .

Statistically there are about one million people in UK diagnosed and probably a further 1/4 million not yet diagnosed and the population of this WORLD WIDE though UK based forum is about 10,000 as you point out so there really isn't much hard data on what may be called success. What I do confirm is that only a few of us masochists who not longer have AF post treatment actually hang around to try and support others so the impression the forum gives may be less positive.

[CDreamer]

I think you need to ask this question first - is AF a disease/condition in its own right? OR is it a symptom of a more general systematic dysfunction?

The well recognized ones are - thyroid, medications for other conditions, lifestyle - smoking, recreational drugs, alcohol, being overweight, genetic predisposition, sleep apnea & over exercising.

Personally I favour the second option.

This seems to be the question being asked by those currently researching AF and if so, there will never be a ‘cure’ - until the underlying system is corrected - and as we are all programmed to fail at some time that’s very, very unlikely.

I think there is a much higher probability of managing the condition well to obtain maximum quality of life - but that is incredibly personal and has numerous variables - mind set, response ability, lifestyle and medical treatments - which are all pretty basic, no new drugs for over 20 years or invasive procedures.

AF is not a life threatening condition and seems to be considered as something that is life changing - sometimes a wake up call and in those cases who have improved their lifestyle - one for the better.

The biggest issue is getting your head around it and unfortunately, outside of this forum and the AFA - not much support for living with AF.

[momist in reply to CDreamer]

Wise words as always CD. The anxiety after the first occurrence is the big thing, and everyone needs to find their own way around that. li17 will have to come to terms with the fear and anxiety somehow, and once that is managed the AF is not so bad after all. The mantra that AF will not kill you directly, certainly helped me, and so does frequent participation in this forum with it's many varied questions and answers. I've learned so much about heart arrhythmias both AF specific and more generally, and for me knowledge is the key to quelling the fear. Dr. Sanjay Gupta is also a great help, with his Youtube channel and calm sensible explanations.

[KMRobbo]

I have had AF for over 2.5 years and have just had ablation hopefully to get me off the meds

"IF" this happens and I do not revert to AF over a number of months I will consider myself cured . If it comes back in the future then on will have to deal with it then.

I know a lot more about it now so should be wiser, but I do not know what started it in the first place and do not recognize any triggers so what can I do? Perhaps less exesses alcohol, food, endurance exercise, get good sleep, less work, ???? Who knows?

Stress is possibly a trigger so adding to the general stress by worrying about it coming back would seem counter productive!😊

[Alemo27]

Hi Li 17

It is so many peoples health problems that medicine cannot cure jet.

To stay on this forum means just share expirince, but not the cure. ..And experience for everybody is different. Just try to adjust your living,including food consumption,activity, etc. Careful approach to medicine.weigt the pros and cons .whenever I feel the PAF is starting ,the bisoprolol helps to stop. And if it is not helping for 1/2 hr. Flecidine .as PIP usually do help.Refused ablation years back. I am 78, no diabet, no blood preasure,no overweight .The only Apixaban,as a blood thinner I am taking everyday.

[li17]

Thanks everyone for so much good advices.

[cassie46]

I believe that I have had AF for at least 15 years, looking back now over some of the attacks I had, but were always put down to stress. My blood pressure then was always a little erratic and my HR was never mentioned, in fact when I took my own blood pressure I never looked at the HR. I was a hospital emergency in Jan 2014 with heart failure and was in for 14 days. AF was also diagnosed, had all the tests and sent home medication for both. Further along the line it is now permanent AF.

I do not have very bad episodes of palpitations but I have good and bad days, tiredness, breathless and heart doing quite a few wobbles regularly. My only option now is a pace and ablate, so considering that.

You mention not many people are on forums knowing the number who have AF. I believe that there are many folk who get their diagnoses, given the medication and just plod on - I have come across 6 people at my GP surgery, they donn't query the GP about side effects of drugs, just seem to think they have to put up with it. Then there are those of the older generation of Affibers (I am 71) who are not active on computers or find navigating the internet difficult so never get to use theses sites. I will have no cure for my AF but if I go ahead with the pace and ablate I should have a better QOL.

Cassie