Has anyone been "cured" of AF?

Stop worrying about what may never happen and enjoy today. There are hundreds of people who would love to be in your shoes right now I suspect. Cure is not a word often used about AF as it is a condition rather than a disease.but take what you have for now.and if things go whatsiits up one day in the future then you deal with that when or if it happens. With what is in the news right now the world could end next week so live every day as if it were your ;last and one day you will be right.

Bob

Did I say in my question that I was worried or indeed that I didn't appreciate that there were a lot of people who were worse off than me? I was merely curious as to whether anyone else had experienced the same situation as I had. I thought that this forum was here for people to pose questions and others who have had a similar experience to give advice, rather than to be given the impression that I was fussing over nothing. I have had a lot of medical issues throughout my life from a heart operation when I was 7 to DVT's and a pulmonary embolism in my 20's. I do enjoy my life probably more than most other people do.

I'm sorry if you took offence at my flippant comments. I was merely trying to point out that cure is not a word often heard where AF is concerned and that there are worse things that can happen.. We should all live for the moment and enjoy what we have was my message. Yes I know about health problems and am currently under treatment for a far more lethal illness which thankfully I seem to be beating. If that makes me sound callous then I apologise. I have spent the last seven years helping people along their journey of AF but sadly I can't always get it right.

Bob

I accept your apology. I probably over reacted and I am sorry. You do a brilliant job on the site and I am sure we all appreciate your time and advice. Good luck with fighting your other illness.

But you mostly do x

I echo dedeottie, you get it right so many times Bob which is why you are held in such high regard by the rest of us.

Thanks Jan but I do sometimes tire of the struggle to get it right every time. .. I e mailed direct to another "volunteer" who has been missing for some months and her comment was that she got so sick of answering the same question day after day. Whilst I know what she means I also know that the newbies haven't seen the previous 150 times it has been asked.so do try to be fresh every time. I guess sometimes my halo slips. Thanks for the support anyway.

Bob

PS Maybe there is a case for FAQs?

Yes there is a case for FAQs, we could write it as a post between us and then ask them to make it "sticky" so it stays at the top? what do you think?

I am new to the site and the first thing I looked for was FAQs, but sometimes I guess people ask questions to get some personal attention and reassurance - often sadly lacking elsewhere (nearly forgot I am not on FB and added an emoticon)

I agree that newbies more than anything need assurance. When I started my journey in 2004 there was nothing out there and I felt so frightened and thought I would die. FAQs may be useful but there is nothing like presenting yourself to the group and finding that you are not alone after all. I will discuss this with Admin and see if it is possible to do as Ian suggested but would really not want people to be put off posting and discussing their problems.

Ian we can look into this off forum on message I think.

Bob

sounds good bean!!?

Bob keep doing what you are doing and we are all glad you are there when we need advice like I do nearly all the time. Dont take any notice of negative comments on issues raised here, I think we all have a bad day and sometimes worry about this AF but as you said we have to face life head on and get on with you. Bless you Bob and I hope that what you are facing now you will overcome it.

yes bobd,keep up the good work.

I'm tempted to say Roll on Death till I have a rest. No more colds, electricity and gas bill and no more AF.

Actually in my case A.F. has taught me to live in the moment. Previously I would rush through everything without pausing for thought! At the moment my A.F. is totally controlled by flecanide and I can't believe my luck. After 12 years out of rhythm every day in rhythm is amazing. I don't know how long it will last so I'm making the most of every moment. I could be run over by a bus tomorrow anyway or get some other illness so it's not a bad attitude to develop. Good luck and I hope you continue to enjoy good times x

Thank you. I hope it continues as well. Fingers crossed.

Lovely sentiment. It was AF which prepared me to deal with the cancer so I will be forever grateful for every day.

Bob

so tell me, if you are AF free why bother coming to this site?

Please forgive my ignorance but surely most people who are on medication for AF should be in NSR, otherwise why take the meds?

Hi Mary

Many are on meds to control the AF not to necessarily keep then in NSR, but perhaps to make the epidodes less frequent, or less severe. I am on meds but in perisistent 24 hours A Fib, and I take the meds to a) save me from a stroke and b) reduce my heart rate which would otherwise be higher and more dangerous.

Be well

Ian

Thanks for that information Beancounter. I now understand that like v624jbb I am extremely lucky to have been in NSR after chemical cardioversion in July 2013. Since that lone episode I have been on flecainide, bisoprolol and warfarin. My EP is now reducing flecainide and by next week I will be totally off it, remaining on bisoprolol and warfarin (which I will remain on for life). I have had a few flutters since reducing flecainide but have my fingers crossed that all will be well when I stop totally. I truly believed that medication as a first line of treatment, followed up by ablation/s if medication was unsuccessful was the answer to all our problems - I have obviously been rather naive about this and am now more in the know than I was. Keep well everyone.

Now now, remember your manners.

Amen to that. You and Bob are right, it's all about living in the moment and being grateful for what you have. AF teaches you that and it's a valuable lesson. I am sure I appreciate my life more for having had that knowledge that it might end at any time. Which is always true for all of us, but most people don't have that perspective. Best of luck to all of us, I say...

I do like your post dedeottie. Sums it up for me as well. Life has improved and AF's made me really think about what's actually important. I was forced by AF to give up things that I thought were important, but they weren't, and life is actually better now. K

Hi again. I really do understand how you feel. It would be great if the docs could tell us how long a particular med would work for. The best I could get out of my E.P. was that he would check on me again in 2 years unless It came back again in the meantime.However I know of people who have been A.F. free for 15 years while taking the same meds as me so that's reassuring. I think we just have to accept that everyone seems to have different experiences of this thing and if one drug stops working there are others to try and ablation to consider. Sounds like you have had a rough ride with your health so I hope you get a good long break from A.F. x

Thank you dedeottie. It is nice to hear that you know of people who have been free of AF for 15 years. As you say everyone is different and I am enjoying being AF free at the moment. My question was simply one of curiosity.

Thank you v624jbb for asking such a great question. It has helped me a lot to read the answers. I totally understand where you are coming from. I'm having a very hard time trying to come to terms with having AF. It has promoted such a lot of anxiety in me it really isn't funny. I need to find out more about the triggers and also a good diet.. My a fibb is under control at the moment TG since end of Sept last year but I'm longing to get off the meds as they really don't suit me!

I hope you continue to be well and any tips you have do please share them.

Biddy

Hi Biddy. I seem to have opened a can of worms with this question but by the look of the number of responses a lot of people need good support, perhaps from those people who have lived with AF for a number of years. I really appreciate the people who have taken the time to do so. I think when you are newly diagnosed it is very hard and there are many questions going around in your head. Often doctors are too busy and many deal with people who have much more severe heart conditions and because it isn't life threatening they sometimes don't see it as a problem.I am only on a beta-blocker (bisoprolol) which at the moment appears to be doing the trick although my heart rate drops down to low 40's at times which makes me very light-headed. I am worried that if I come off it I will go back into AF. It's a catch 22 really. I am just hoping I can stay in NSR for as long as possible. I hope you do too. Good luck. Val

hi v624, The medical profession does not know what causes a fib , so it is up to the patient to find out what individual triggers they have. In my case , post ablation , i have found that excess sugar in my diet has triggered ectopic beats. I suspect that the modern day diet is a contributory factor in the increased incidence of a fib.

I think you are rightly being optimistic , but do take it as your own responsibility to find individual triggers for your own condition.

good luck

phil

Alcohol definitely gives me more ectopic beats which is a bit of a bummer. Thanks for your reply

It's wear and tear really. Buy a new car and run it for the time we all have been running around and it will act up.

Hi v624jbb

I don't know whether someone can have AF once and then never again, but would guess it's possible but we'd probably not hear from them! Usually though, from what I know, it's a condition that you need to control. I've had it for probably 20 years, had a couple of ablations and now on drugs which are controlling my constant bundles of ectopics to perfection. But I've also had 8 years free of drugs and arrhythmia after my first ablation.

So it's more of a constant control rather than cure I feel. If you get to understand it, and how to manipulate your way through the medical profession, it will hopefully not be a problem. This forum has been invaluable for me, life-changing actually ( for the better, I should add ).

Regards

Koll

Thank you for your reply and I hope you stay free of AF for the foreseeable future.

v624jbb,

I had an ablation last year, it has transformed my life, so far so good, I was reluctant at first to get it done but it got progressively worse, at first I tried vitamins, relaxation, diet, avoided this and that all of it was a waste of time and gave me false hope, in most cases I believe you can’t control it…if only it were that easy, I wish you luck it’s not an easy road to travel but hopefully you’ll get there

Thank you.

Hi

Having taken myself off the Bisoprolol and reduced Flex to night time only could go days feel symptom free and felt pretty much the same as yourself...

Then two weeks ago after visit with Registrar 're Ablation l came off all meds except Warfarin...Didn't last long after two days AF was back with a vengeance now reinstated Flecainide...

I think that's the only way to find out is AF is "cured" .

There are many people with AF who are also suffering from other conditions far more life threatening...I don't know what fate has in store for me neither does anyone else...AF l believe was my destiny and l try to embrace it just like an old friend...

Thank you for posting your question...It helped me knowing there is someone out there with the same thoughts...

Carol....

Thank you carol.

Hi Caromia, Can I ask you how you feel on Flecinide? I'm supposed to be taking 100mgs twicw a day but reduced to 50mgs during the day and 100mgs at night. I'm also taking Digoxin and Ramipril 1.25mgs for high BP. I'm feeling quite dizzy at times and depressed and not sleeping well. I'm convinced it's the Flecinide. But it has gotton my A F under control. Have had no episode since end of Sept last year. But I'm at my wits end with the tiredness, dizzyness and depression. I'm slow to take more meds (anti-depressants) to counteract the effects of Flecinide! But have to admit at times I am tempted!

Hi

Initially after being diagnosed l was on Bisoprolol and Flecainide....l had so many symptoms including debilitating tiredness..Not knowing whether it was the AF or meds.

The Cardiologist was not sympathetic as l was on such a low doses he couldn't see how it was possible to feel so lethargic...

At first l thought it was the Flecainide but took a gamble and stopped taking the Bisoprolol...l felt the benefit straight away...The tiredness disappeared the tingling in face,tongue and fingers also...

I feel much more like my old self now just on the Flecainide apart from the occasional flutter...

I would say it's not the Flec that is giving you those debilitating feelings but maybe one of the other drugs but l no expert...

I do sympathize with you l just wanted to crawl into my pit and sleep ...My business has suffered and friends disappeared but picking myself up again now...

Looking back l wasn't assertive enough with the Cardiologist when he dismissed how l was feeling and had to trust my own judgement and act accordingly

So please don't suffer like l did for over 12 months just make sure your listened to and asked for your meds to be reviewed...

Hope your feeling better soon.

Carol...

Thank you so much Carol. Very much appreciated.

Hi - When I recently took Digoxin on two separate occasions for short periods (I couldn't stand any longer) it made me feel tired, confused, depressed and generally ill. I'm the type of person who never normally feels down. It was just absolute hell and I thought I was going out of my mind! I would bet that is what is causing you to feel like you do.

HMMMMM! Very interesting Jean! Hadn't thought of that! Might try a wee experiment!! Thank you so much! What a great forum this is!!

Hi, not sure if you really want to hear this, but my first diagnosed episode of AF seemed to be triggered by a combi of a virus, infection and stress so I hoped it was a one-off although my heart was still acting up in the form of ectopics and palpitations. However my genes and other health issues were against me, so later I was diagnosed with PAF and put on permanent meds which work very well. Coming to this forum has been very helpful as the info given to me by medics has been minimal, also I have realised how lucky I am! I really hope you continue well for a long time but as often posted by others, the better you look after yourself the more lucky you will be.

Hi - My Paroxysmal AF started with me having just one or two attacks a year and then it gradually got worse. It got to the point where everything I did exhausted me. I would go for my usual long walk and then flake out on the settee and fall asleep. Eventually anything that required effort was impossible for me to do, just bending down to pick up hedge clippings was exhausting I could only bend and scoop up about three times before having to give in.

After my first ablation in June 2011 my energy levels soared and I felt so much more alive, but the AF episodes increased. Last June I had a second ablation and now I have periods of feeling really well and then month long episodes with my heart racing constantly. My resting rate has been around 118bpm for the last 5 weeks, next week I have yet another cardoversion (had one last November and one a year before).

My ex boss had two ablations and claimed for many years that it had cured his AF, but I haven't spoken to him for a while now. I guess that people who have been cured have probably given up coming to this site.

I don't think you are being unrealistic in hoping you are cured. How do you feel in general now after taking beta blockers? Do they make you feel tired?

I feel fine most days. Sometimes a little tired but I have other health issues and it could be the cause. I was very tired for the first few months when I was first diagnosed with AF but wasn't sure whether that was down to the AF or the medication.

My personal view is you are being unrealistic ..... but dream on if you want to !

Make no mistake ..... this is a bloody mongrel condition ..... a hydraheaded monster ..... its all things to all people. I don't know how long you've been reading posts on here but I've been reading these posts on this and on the older (now defunct) Yahoo Groups site for 4 years. Causes of it, and triggers (and in my experience the cause of AF is quite a different issue to triggers) are so different that it is just about impossible to rationalise it - Cardio Consultants and EP's are on a hiding to nothing. And that doesn't even begin to touch on the quality of GP's, Consultants and EP's scattered around the country. But then these healthcare professionals are only concerned with fixing the thing and trying to restore a quality of life - not into defining a cause or a trigger. Its down to each individual to work it out for themselves. I believe that if you get an early diagnosis and treatment started then you have a chance of controlling the bloody mongrel, if you leave it and pretend it'll go away ( and it might) then that's your choice.If you have other medical conditions, even those that aren't cardiac related then in my view one could be in for an uphill battle.

I had led a relatively healthy lifestyle, in hospital once for a cartilidge removal, minor digestive issues in my thirties, the usual run of DIY carelessness putting me into A & E on occasions and that's all. Then after about 2 and half years of massive palpitations AF hit me. Why - I asked, nobody could tell me so I put it down to stress. Since then I've researched and have come to the view that in those 2 and half years I carried my mobile phone in my shirt pocket (over my heart) and looking at comments from posts on here I am now persuaded to the view that the cause of my AF may well have come from electrosensitivity arising from micro/ radiowaves emitted from my mobile phone. However, after about 15 months of regular AF events I linked the onset of an AF event to a trigger - a misbehaving digestive system. The digestive system and the heart are both controlled by the vagal (or vagus) nerve. I decided to consult a Nutrionist and treat the digestive system rather than the cardiac system and now after three years of a certain diet I hardly ever have an AF event. Palpitations yeah, sure, occasionally, but nothing else. But make no mistake - I don't trust this condition - it could give me a thrashing any time it chooses. But I'm ready for it !

So while apologising for the length of this my advice is (even if you don't contribute to posts) to read whats on here by a myriad of different people in different countries and inwardly digest their comments and opinions - you WILL learn lots and lots.

May the force be with you all.

Aussie John

Hi John. Thank you for your post. Funnily enough I think my AF was triggered by a problem with my digestive system. The month previous to me getting AF, I was in hospital with diverticulitis. My cardiologist is convinced that was the trigger. I am trying to eat a much healthier diet now and I am sure that is helping with the AF.

G`day Aussie John, - Thanks for your reply & my apologies for not replying sooner but I went out for lunch with my eldest son & his `partner`.

Regarding your comment that I am being unrealistic in holding to the views that I do. I deduce from your comment that you are in someway involved in cardiology either as a nurse ,technician or in some other way. You are quite well read & knowledged about the condition of AF.

My nurses knowledge is only derived from my experience as a senior cardiac nurse - (Mostly in South Africa).

All `effective` medicines possess side effects which are `Extensions of their pharmacological actions.` and are not remedial in any way & cause many problems.

Some medicines are totally contraindicated if there are co -morbidities suffered by the patient being treated , as in my own case with Warfarin .. I suffered a spider bite in South Africa which caused a duodenal ulcer which perforated causing massive gastric bleeding & I had a Bilroth 2 gastrectomy leaving me with a propensity to bleed from my stomach & the Warfarin caused me to be hospitalised on three occasions having collapsed with loss of blood. The introduction of a PPI has helped in lessening the severity of the bleeding but I still bleed profusely from my nose when I bend forward & my clothes are ruined because of this . I bruise very easily & all in all I would prefer to suffer a `stroke` rather than take Warfarin . One side effect which I have suffered with is `gout` which is a `query` side effect of Warfarin. which has nearly crippled me -it is also a `side effect` of Lasix & so I have ceased taking both of these drugs & I can now walk quite well. Following my second ablation at St.Barts I am now restored to SR with a few ventricular ectopics (Which I am aware of but are transient) and cause me no discomfort. I go to St.Barts on Friday next to see Prof.Schilling & hopefully to be discharged from his care. I have been fitted with a `Watchmans ` device which has closed off the atrial chamber which is the cause of the stagnated blood which clots & causes strokes & so with my `little ` knowledge I see no need to take Warfarin ,,Lasix or the PPI (Lansoprazole & I am free of side effects.

For many years I was a Medical Rep. for a pharmaceutical company which manufactured a `cardio- selective beta blocker .` (If there is such a thing??) & the research showed that young men with mildly elevated blood pressure developed `heart conditions ` later in life & I myself was such a `young man` at the time with a mildly elevated B/P. I then developed paroxysmal AF.. The GPs I visited were unconvinced by the evidence I produced & I wonder how many young men of that time with mildly elevated B/P are now suffering from A/F.

Thanks for your comment - I maybe unrealistic Aussiejon but I am alive at nearly 83yrs. & still enjoying life . Lovely country that you live in which I have visited - a shame you don't have a decent pint???

oltimer

G'day oltimer,

Thanks for your comments. Sorry to say on this bloody convoluted site I can't find your original post against which I commented. Seem to remember you asked a question and I gave you an answer and threw in a shedload of stuff based on what I'd read over the last 4 years on this site and the older now defunct Yahoo Groups site. So that's where I was coming from ! In any event I'm still looking for statistics which identify patients causes of AF and later triggers (where triggers are different from causes). For me I was happy enough to live with the knowledge of a perfectly healthy life behind me then at 65 AF hit. Why ? Well I'd had 2 and half years of massive palpitations but could never get to my GP quick enough as I was a shift worker and typically, GP's opening hours didn't fit with my shift patterns ! I figured it was stress. I am now very sure that AF was caused by my carrying my mobile phone in my left shirt pocket for exactly the time period I was having the palpitations. In other words I seem to have a problem with electro sensitivity. Later triggers were quite different - coming from digestive issues via vagal nerve. 3 years down the track I can't remember my last AF event because following a strict diet seems to have done the job. I'm now back in UK in Cornwall and sadly I can no longer drink a decent pint - or any pint !! Restricted to G & T, and assorted wines. Favourite is reds from the southern hemisphere, Aussie reds, South African reds, or even Chilean and Argentinian reds. You'll see from this why I'm so interested in Causes and triggers.

Cheers oltimer, and you keep on keepin' on. Way to go.

John

Hi ! John

I am sure mine commenced with my severe illness contracted in the army which precipitated my discharge form HMF in 1950 - `P8 unfit for further military service.` I went down with pneumonia which was badly nursed & I developed pleural effusion which had to be drained nine times in about three. months as my right lung kept filling up with fluid & it exerted pressure on my heart & displaced it further to the left. when I became ambulant at about 3 months I always had a rapid heart rate until I lay & rested up for about twenty minutes .

I think all these cases reported on this site can trace something in their past which has exerted stress, pressure or toxicity on their hearts or cardiac system..

I was left with a rapid heart rate -as a -norm & also a mildly elevated blood pressure reading & yet I played part time pro . soccer for £2 .50p per week.

The Sino Atrial Node is where the signal for the heart beat cycle to commence originates & if it is thrown out of kilter for any length of time you are going to get other areas take over the cycle & all sorts of different rythms start to manifest themselves like P.A.T or bigemini or trigemini -extra systoles there are many heart rhythm disorders ..

I was warned that electro - cardioversion wouldn't last & the guy was right . Ablation is as yet the only satisfactory treatment for long term relief or cure. Medication carries the risk of unacceptable side effects of which quite a few are mentioned on this Forum..

We are all - `like a car` - ultimately finite & the parts will wear out & we will have to step up to the breach one day but I intend to delay the eventuality as long as possible.& I don't wish to be stuffing a handful of pills (With all the various side effects & toxic effects that they give rise to ) into my mouth two or three times a day) That isn`t living -that is existing . `Rowlocks` to that.

Get a `Watchmans` device fitted & you wont even need the Warfarin or Dabigatrin..

Good luck to all

oltimer .

Hello,

I had two episodes of afib 5 years ago. Originally treated with Rythmol, EP took me off and have been on Cardizem since then. I have worn a holtor event monitor because I am prone to palpitations, but nothing except a short burst of svt, less than 7 seconds, showed up in 30 days. I don't know if I'll ever have another episode or not, hopefully not, but will deal with that if it does happen. I am pretty optimistic and can see you have a positive outlook as well. I found certain triggers with palpitations, one being digestive issues. Seems if I have indigestion, I will get a few extra beats..my doctor said that is very common. Listen to your body and continue to enjoy life.

All the best to everyone here

Thank you. That is reassuring to know. Hope you continue to be healthy.

All the best to you as well, try and be as stress free as possible

Just a comment really. My husband had one episode of AF more than15 years ago after an episode of intense exertion!!! It lasted about four days and he was on his way to be started on warfarin when he went back into NSR so no action taken (already on beta blockers for hypertension ) Never had another episode till May 2012. Now in permanent AF. Tho new event was blamed on the fact that his silent MI affected an area of the heart near the sino atrial node.,

Hi, thank you for asking the original question. It's a question I have long wondered about and a question I very persistently ask medical people here (in the US). And here you get as much face time as you care to pay for with the specialist -- lived in the UK for 16 years and met many fine doctors, but they were really overworked and hence hard to really advise much I felt. The advice I got is that a single episode of AF in your life is unlikely because your heart has to have the ability to 'misfire' and cause the very rapid beats. As your heart ages, you are more likely to have it again ... I had lone afib (about 16 hours only) after emergency gallbladder surgery 18 months ago, I had a bad infection and was very dehydrated from throwing up a lot prior to surgery. I have looked up a lot of the medical literature and I totally agree with other comments -- basically no one knows because there isn't any constant measurement of people. Some people could easily have afib and never know, they might be more prone to strokes (my mother's afib was diagnosed only after she had a stroke) or maybe not. They only look at the hearts that are 'caught' in afib so we only get a partial picture. I agree completely that aggressive management, questions, as much evaluation as you can get, is really important. It's a pain because who wants to push to wear at Holter. I agree though that it changed my outlook on things, I am grateful for health and I hope -- unlike my mother -- that I can avoid strokes. Afib is a condition that demands a lot of choice from the patient because there are important choices to be made -- if you had Afib once for 16 hours would you go on blood thinners? I have not, although my GP thought I should (my cardiologist does not think so, I am on calcium channel blockers instead). I share the frustration that it's a sort of all or nothing thing ...

Hi v624jbb,

Your history mirrors mine. I was diagnosed just over a year ago and had several unpleasant episodes between Feb and April until the Bisopralol kicked in. I then just had some ectopics and a few pips and squeaks especially on lying down at night. I was optimistic but realistic, did what I could to keep AF at bay and just got on with life including continuing with a fantastic holiday to Namibia, which all my friends thought I should cancel!! 8 months later, last December, I had another 5 hour episode, starting at 3 am and stopping when I ate my bowl of porridge at 8am. I was disappointed but not surprised as such is the nature of the beast.

We are all so different but some of us share similarities. I'm one of the vagally mediated group, can't lie on my left side at night, must eat early in the evening and a small amount, must avoid wind producing foods such as cabbage, don't do well with foods containing tyramine, one of the worst offenders being red wine, and alcohol in general. I've just started following a modified version of Aussie John's diet and I'm going to try acupuncture.

I read everything I can and choose the path that feels right for me, after all knowledge is power. I have recently seen an EP who gave me loads of time and answered all my questions, and who has offered me an ablation. I would trust him with my heart and I know that sooner is better than later for this procedure, however my instinct tells me that the time is not quite right for me yet.

This is my journey, in brief, good luck with yours and I sincerely hope you do manage to stay in NSR.

Liz

Thank you

Hi Liz, You say you can't lie on your left side at night. I find some nights I can and some nights I can't. What do you mean by vagally mediated group? And what is Aussie John's diet? How are you doing on Bisoprolol? I'm finding that I am very sensitive to medication especially to Beta Blockers and also to Flecinide which I am on at the moment. My AF is under control but my quality of life has taken a nose dive. Please nobody tell me to cheer up and get on with my life. Believe me I am trying and am normally a very easygoing and sunshiny person but when you're this tired it's seems impossible. I need some hope and perhaps there is more I could be doing with my diet. I'm still getting a thumping heart at night but it's not going too fast. Probebly controlled by Digoxin and Flecinide.

Thank you all for your help.

Biddy

Hi Biddy, I'll start with the vagally mediated bit first. Some people find that exercise triggers their AF. Other people find their episodes start at night and that on and off they have trouble lying down and/or sleeping on their left side, which is me. The vagus nerve, or wandering nerve as it is sometimes called, influences the heart and also helps to keep the digestive tract in working order. It follows then that if you upset your digestion it could affect your heart. Hence the term vagally mediated. I've spent the last year or so trying to work out what's triggering things at night. I go for sometimes quite lengthy periods of jumping into bed, lying down and everything stays peaceful. Then I have some nights when I just can't lie down for a couple of hours. if I do I have lots of ectopics which threaten to go into AF. If I sit up I'm fine, so not wanting to risk an AF episode I end up upright and gradually sliding down and watching what happens. If I fall asleep sitting up I end up with a very stiff neck so it's a bugger! This has prompted me to look at diet as some nights my stomach sounds like Mount Etna about to erupt and these nights are when things are at their worst ticker wise.

The diet my GP mentioned, and I believe Aussie John follows, is called the FODMAP diet and was devised to help people with IBS and is proving very successful for this. I'm not following it to the letter but I am being very careful as the day progresses to cut out anything which might upset me at bedtime, and sticking with eating early and a small evening meal. Ginger is thought to calm the vagus nerve so I have started having ginger tea before I go to bed but I now need to get my INR checked as it can interact with warfarin. Red wine anytime and cheese and bananas in the evening will upset me and I think this is where the tyramine comes in.

Finally, phew!! Drugs. I was terrible on Bisopralol to start with and had to start with a low dose and gradually build up. My pulse was sometimes below 50 and at night I was convinced this was giving me runs of AF. Studies have shown that Bisopralol is not the best drug for Vagal AF, well I proved that, but over time my pulse seems to have adjusted to around 60. We live in a very hilly area and I was puffing trying to go uphill, which as I had always been so fit was not nice, and I needed a power nap in the afternoon to survive. I persevered and am fine now on 7.5 mgs. My EP wants me to try Flecanide, which I may well have to do but I'm trying the vagus nerve calming stuff first and am having some acupuncture soon.

It's hard to stay upbeat when you are so tired, disturbed nights and anxiety are physically and emotionally draining and I'm sorry you're feeling down. A few good nights sleep would certainly be helpful. It's tricky to change drugs which seem to be keeping the AF at bay, especially as 5 months without an episode is fantastic.

Do keep me posted and perhaps we could swap diet experiences.

Liz

Thank you so much Liz for all that! Very interesting and so lovely to find someone on here who is open and willing to try alternative healing like diet and acupuncture. I'm beginning to realize that I'm a bit like you in that I have some digestive stuff going on. Recently I'm having a bit of trouble lying on my left side again and I'm getting strong palpitations when I'm lying down also but my pulse is staying at 60 which is good but I'm getting funny feelings in my heart and tingling in my hands and feet at times. I'm trying Melatonin at the moment to help me sleep but it's not much good. Oh for a full night's sleep!

I looked up FODMAPS diet and it looks very interesting. No fermented foods and I've been eating yogurt and saurkraut quite a bit recently and drinking red wine thinking it was good for the heart! Oh Boy! And as for dried fruit! I love prunes and natural apricots! Well at least I know now. Yes let's keep in touch please. I'm still holding out for a CURE!! I so want my life and energy back!!

Best wishes Liz and look forward to hearing any more tips

Biddy

Hi v624jbb. There almost certainly isn't a cure for AF as, once you have had it, it is inherent and can crop up again. However, 'cure' is an ambiguous term and doesn't necessarily mean permanence. My first AF happened when I was 34 and at that age I wasn't ready to settle for a quiet life. Anyway, it was 3 years before it happened again and then at intervals of 9 years and 22 years. I was 68 by then and every one of those AF free periods was a cure for me and I achieved, by my standards, an awful lot in that time. So I guess, stay cured until, when or if, AF comes back - and if it does, just roll with it until you're cured again! Take care and enjoy life!.

David

Thanks David. I know I have AF for life. Its nice to know it is possible to go for long periods without any problems. I shall live in hope.

Hi- new to this site although I've had AF for a few years. It's really great to hear everyone's experiences and views. I've had 2 ablations- the second one worked really well. Stopped most Meds except heavy duty aspirin, and am relatively symptom free. I would go out of rhythm perhaps once every few months for a few hours. Not enough, I thought, to mention to my doc. Then last week I had an acute ischemic stroke. Sheesh! Couldn't speak and was totally out of it. Husband rushed me to ER... anyway, I am perfectly fine now, was in the hospital for only 2 days. But I am now on a regular blood thinner. Sounds like most of you are already on something, but for anyone who is only taking heavy duty aspirin- if you have only one episode, you are in danger of stroke. Much as I don't like taking Meds, (way to strong for that, don't ya know!) I now admit AF is stronger than me! I (and especially my husband) are resting a little easier now.

I was hit with the news I had af feb 2013 I started off on warfarin and flecanide 100mg a day. Slowly but surely my cardio as taken me off warfarin and I now only take 50 mg of flecanide now, in november this year I will be off all meds if everything stays the same. My cardio reckons the term af is too broadly use .

There can be cures to atrial fibrillation, but only through some type of invasive procedure. You have to interrupt the chaotic impulses or re-entry circuits of the upper chambers or to destroy the cells that emit irregular signals that starts the afib

I have been cured for 16 years after being a afib sufferer for most of my life until age 64, when I was cured by the full Cox maze procedure.

The maze procedure forms scar tissue in a maze type pattern of the upper chambers that prevents any fibrillation to continue. The electric impulse of the heart cannot cross scar tissue, so this maze pattern routs the impulse in a uniform path through the upper chambers causing them to contract, and then on to the AV node.

Atrial fibrillation is a progressive ailment that increases with age. Some medications work for patients for a time, but usually decrease in efficiency with time.

Hope this helps some.

Jack

Hi Jackdrum I haven't heard from you before. You may not have noticed but I needed some information and/or experiences with the Mini Maze procedure, I am not sure whether this is Cox maze - I am considering a second opinion and a future ablation some time this year, there is only one clinic who does this procedure in Melbourne. The surgeons are not cardiologists or EPs but they are cardiac surgeons with a lot of operations to their credit. If you could give me some more information that would be greatly appreciated.

Ultramarine, don't think I saw your post to me until tonight. You mentioned Melbourne. Evidently you live in Australia.

I am having problems navigating these threads on this forum, so if you need any more information you could contact me at jackdrum1@gmail.com.

None of mini maze procedures are the full Cox maze that I had. The lesions that make up the maze pattern are not all established with the mini maze and therefore cannot be as effective as the full maze procedure.. The full maze is open heart surgery, except the most experienced surgeons can do the maze without opening up the sternum.

If I can help you any more, contact me in a regular email.

Best wishes and prayers. Jack

Thank you so much for sharing this information.

I've had three ablations and about three years free of Afib. Now it seems to have come back with a vengeance in conjunction with moderate to severe mitral valve regurgitation. My electrophysiologist is now suggesting the Maze procedure in conjunction with a procedure to repair the mitral valve.

I was interested and pleased to learn that you had a Maze procedure and that it was successful. But though I'm in good health otherwise, I'm an 81 year old female, and it seems like a drastic solution. Was it a painful procedure and was the recovery difficult?

Trish, I was only 64 when I had the maze, but am 80 now. The maze at that time was a full open chest surgical procedure. For me I was in the hospital for 5 days and had a rapid recovery after going home. It was much easier that I had anticipated. There are a few surgeons now that can do the full maze without opening the sternum. Dr. Geiss that did my maze has been doing them since 1990, but there are other good maze surgeons. The main thing is go to a surgeon that has a lot of experience in doing the full maze procedure. you can ask me more if you want to at jackdrum1@gmail.com Best wishes and prayers. Jack

Thanks so much, Jackdrum, for this information. I'm glad your procedure was so successful. I'm still weighing the pros and cons for me, and your input has helped a great deal. I may, indeed, contact you again with questions after I see the surgeon. Trish

Bob I don't post usually but I think you do a great job and without the likes of you the site wouldn't exist. Fortunately I am one of those with no symptoms but appreciate it was found in a routine preop. We'll done keep up

the good work.

Wow. I bet you didn't expect such an incredible response to your question! It shows that the same question has lurked at the back of most of our minds at some point in our A.F. journeys. It is how we have all dealt with it in different ways that is so interesting.x

No I didn't expect this. It was just a question I was curious about and obviously a lot of other people were too. x

You present a really interesting question. About 60% of AF is chromosome DNA genetically specific and the other was 40% environmental. A lot of what causes AF and how it sustains the damage to the atria tissue is still not known. The atria is a high energy tissue and there are also mitochondria related disorders which affect the atria which are even less known about.

The treatment of AF has come on leaps and bounds. 20 years ago there was no ablation and those with non symptomatic AF who were treated promptly might go on to continue to be symptom free. Those of us like me who have endured the problem since late teens are just thankful that management and understanding of the condition has in recent years been come on a long way.

In my long experience the idea of a cure has been replaced with the best management of AF to allow as normal a life as you can get. Optimism for the future and optimum mangement of the AF until the identify the cause of the changes to at the atria tissue which causes the fibrillation is the best next thing.

This has been a fantastic thread of responses to read. So many experiences of one condition. My AF was diagnosed in December and after a brief flirtation with bisoprolol which didn't work, I started on flecanide and warfarin. The warfarin is fine and I am already regarding it as my friend. Flecanide - not so good. The episodes of AF continued with the same frequency as before I started medication (fortnightly on average) and I felt ghastly all the time - extra palpitations at night that kept me awake and that I hadn't had pre flecanide, constantly tired, low, no energy or enthusiasm and still having AF.

Saw the cardiologist last week and he is referring me on to an EP. He also said I could stop the fleccanide and just take it if I have an episode of AF. But he thought I should take bisoprolol again as well. I haven't got round to getting the prescription yet but, is it coincidence? I come off the daily flecanide and have had some good sleep, reduced the extra palpitations and, as my husband said at the weekend, I am more 'my old self'. I know the AF has not been cured, and that I have not found a way of managing it yet so that I still have good quality of life. Talk of ablation is hovering in the wings and so I find the posts on this forum really helpful. But what really strikes me is the vast knowledge and expertise we are all acquiring as we navigate through this thing - as a relative newbie, I am glad I found the forum! I hope the EPs and GPs look at this forum: I'm sure they could learn alot.

Thanks for posting the question v624jbb.

My E.P. actually recommended it to me . I had already found it but he went up in my estimation anyway.x

I posted this on another part of this site but thought some of the ones in this thread may miss it. See what Howie Mandel says about A-Fib. Apparently Ellen Degeneres has A-Fib as well. Look at this site:

fibsorfacts.com/about.aspx

If you wish to know your heart rate, check out:

iheartrhythm.com/

This is in the USA but they will ship worldwide. Two electrical engineers designed this for their father who is a cardiologist. I purchased one and it works. It is a way to know what your heart is doing when it is in A-Fib. Taking or sending a chart to your doctor is sometimes helpful and it can avoid going to the ER. Should you decide to purchase one, when you order, if you tell them, Neil from Canada, referred you, they will give you a small discount. Or just order it at the regular price. This is not meant to be an advertisement. I just started having A-Fib and my wife found the iHeartRhythm site on the internet. I have to run right now but will return with comments about my situation. This site is very helpful and I wish I knew about it several months ago. Cheers!

Hi

i am new to this site having only joined earlier this week, i would say that a cure is possible if 15 years free of episodes of af count.

I had a focal piont ablation of the lower left pulmonary vein in 1999 and up until last year had no discernable af attacks - just the occaisional ectopics.

My quality of life changed considerably and i enjoyed riding fast motorbikes on racetrscks etc and took no medications of any type.

Unfortunately it turned out not to be a complete cure as ghe palpitations returned last year. pretty mild as i was not even sure it was af.

Just had a pvi ablation on monday and hoping this time for permanent solution but you never can be sure.

I think we need to remember everybody is different and we deal withth this demon in our own individual ways.

Sites like this are fantastic. in 1999 there was nothing available you were on your own

best wishes to all

dave