Transition to permanent AF from paroxysmal

I'm curious to know how those of you with permanent (or persistent) AF, experienced the transition from paroxysmal - assuming you didn't start out with a permanent condition. In 2009 I had my first episode with a second a year later. Then they were every two or three months and gradually they increased to one a week. Now I go into AF perhaps two or three times a day, usually only for a few minutes or maybe an hour. (Always 15 minutes after a meal!) I'm guessing that this is the beginning of permanent AF but would be keen to hear from others. I'd also appreciate reassurance, if you can, that the tiredness, lethargy and some breathlessness associated with episodes of paroxysmal AF, diminish somewhat once the condition is permanent. Certainly I have found that the longer my own episodes go on, the less I seem to notice them.

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  • hi

    I was never able to pin point any time when I went from `palps` to Perm AF. But i think in my case it was years.

    I first started having what the hospital at the time called `palpatations`, with no other heart issues. In fact i was playing a lot of football at the time, and often I would have `palps` when the match started, so I used to go in goal, cause I could not run and then after 10 mins or so it would go and I played outfield.

    i was put onto Inderal and Diazepam (i was about 35 at the time). It was not until a visit to the dentist showed up that Diazepam was in fact Valium, that I stopped both meds on my own. (there was a scare about valium at the time).

    I never really noticed the palps other than a few times a year, until maybe 10 years later, when I did realise that I was

    becoming tired all of the time. But this happened very slowly and with various changes in life over the years, it all became less obvious (ie I was not playing hard sports)

    The diagnosis of AF came by pure accident as I was living with it, without knowing (this is in 1998, a good while before the internet as it is today and with less regard to AF), so in my case it was a very gradual slowdown and by the time it was diagnosed i was in permanent AF. The docs that diagnosed it asked why i was not being treated and said that a `trained monkey` could have diagnosed it. Clearly my `monkey` was not very well trained.

    That is why I would advocate all GPs to spend 30 secs just checking pulse of everyone that visits their surgeries.

    So much more is known now and everyone is aware that `AF begets AF` and has to be diagnosed very early on, to have a good chance of putting it right.

    My symptoms have certainly not improved, but I dont think there is a `one size fits all` answer to your question.

  • Better all round to have an ablation now before you do go permanent in my view. I'm sure Beancounter will discuss!


  • My story was exactly the same as yours. Eventually I was having daily A.F. attacks some long and some short with occasional 3 day breaks. I too was get to g used to them and felt I could live with the condition. However I became anxious that it would have a bad long term effect on my heart and anxiety was ruining my quality of life so I played to see an E.P. as the waiting list was over 8 months long. He prescribed a rythm control drug called flecanide but said if it didn't work I should have an ablation. He said that the chances of success with this were higher if it was still paroxysmal but while the flecanide was keeping it under control it wouldn't get any worse. Luckily this drug works for me for now and I feel like a new person. I hadn't realized how much it was affecting me until suddenly it was gone. As Bob says , I think you would wise to consider ablation or meds before it converts to permanent. My E.P. said that mine was still classed as paroxysmal because it was still converting itself even if only for a short time so you probably still have time to act. Hope this is helpful x

  • Dedeottie, how does flecainide work for you? Has it reduced the number of episodes of AF you have or does it simply stop the episodes when they start? Does it always put you back into NSR? Straight away? Are you on any rate control drugs too, such as bisoprolol?

  • Hi Leelec et al

    Oh gosh, nearly my every waking thought if I am honest, although I do surpress it manily because it's just too depressing to think about.

    What's certainly true is that we get used to the symptoms, I think I have been persistent for around 6 years or so, and do I have symptons, Yes, breathlessness, inability to climb hills especially on the bike, even though I was quite fit, and after too large a meal often severe palpitation. Yet despite two formal medicals in that time, no-one thought to take my pulse until I had an "episode" in Nov 12. Since then I think most people here know, failed CV, lots of tests and now they leave me alone because the treatment would potentially leave me worse off than I currently am.

    Bob rightly would say and does, the sooner the ablation the better, and that's true ablations are more successful the earlier they are done, and better to get it done and over with. BUT at the very least I would be likely to have 3 or 4 bad months, and no guarantees that after the ablation I would have less symptons than I do now.

    Then the other question, what damage is being done by me being in AF 24/7?, there seems to be disagreement, Prof Schilling was very clear with me that I was a "lucky bugger" and could easily live to 90 with no further symptons, and yet others will tell you that AF will only ever get worse. Who do you follow? No-one really seems to know

    So trying to get back to your question, do the symptoms get any better? Nope, but do you get used to living with them Most certainly, the human is incredible, and seems to be able to amend to almost every condition. But what I would say is that ablation does seem to work better with PAF than persistent like mine, so what does your EP say?

    Take care


  • Thank you all for that - it's helpful. I confess I've been rather complacent for the last 4 years and I probably should have got on with things a little sooner. I have a cardiologist appointment in March and I am also making arrangements now to see an EP in Leeds in the near future to at least talk about an ablation, though I haven't explored the flecainide et al route yet. These meds clearly work for you Deodottie. As you say, Beancounter, the real concern is the long term effect on the heart of being in permanent AF. I'm currently on bisoprolol which keeps the rate down to between 55 and 60 at rest and even when in AF it doesn't get above 80 - that's counting the irregular beats manually. So there shouldn't be any undue strain on the ventricle but I suppose it depends on what the turmoil in the atrium is doing long term. It's a shame there's not a consensus opinion from the experts. Thank you all again but any further inputs will be gratefully read.

  • Hi. I am on 100mg of flecanide twice a day and am completely symptom free for the first time in at least 12 years. I also take 1.25 mg of bisoprolol ..(rate control) and warfarin. After the first few days some small side effects I had disappeared and never came back.don't know how long it will work for but for now it's great.x

  • To clarify dedeottie, when you say symptom free - do you mean AF free? Or just free of the physical effects of AF.

  • Hi. I am completely A.F. free ! Before taking the flecanide I was in A.F. for approx 75% of the time. E.p.says that one third of people have total success with flex and side effect free in another third it works but the side effects are too bad to carry on taking it. I'm lucky to be in the first third I guess but it's worth a try. By the way just to be clear my pulse is steady as a rock and there is no fluttering in the atria. Hope this helps.

  • Thank you, that's very encouraging - even if it is only a 1 in 3 shot.

  • Hi Lee

    I went from paroxysmal to constant AF over a period of maybe 2 years, hard to tell really. When I was diagnosed it was already 24/7 and was first tried on various drugs till they found one that worked for me. Then 2 years later, I had a PVI ablation so I could get off the drugs which were affecting my brain.

    My EP said that because my AF was constant it would be easy to fix because they could tell straight away whether they had got it or not, whereas when it's intermittent they can never be sure. The ablation was a 100% and immediate success and I was clear of AF and drugs for another 8 years. Coming back a bit now but it's different, so on new drugs which seem good.

    So if he was correct, and you have AF 24/7 then maybe the same will apply so go for it. But as others have said, having 24/7 AF for too long is not good, so sooner the better, if it can't be controlled by drugs I suppose?

    I'm just a patient and only know what I've experienced and been told.

    Best wishes


  • Thanks Koll.

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