Is Lone AF less progressive? - Atrial Fibrillati...

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Is Lone AF less progressive?

li17 profile image
li17
17 Replies

As the title, that's what I read somewhere. Is it true? From all forums/communities, I found people with LAF can go decades without much progression. But some LAF did progress. Two of my doctors told me they had a single episode of LAF about 30 years ago and never had it again. One of my friend in church told me she had an LAF episode about 10 years ago but hasn't had it again. I'm just throwing this out to see what to expect.

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li17 profile image
li17
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17 Replies
Thomps95 profile image
Thomps95

No.

AF is more a "marker" of potential cardiovascular problems, so when you are otherwise healthy, it doesn't tend to get worse and, as you point out, it can get better.

Of course, AF may get worse if general health circumstances get worse - because one's threshold for AF is affected by general health.

My AF is about the same as it was when I was first diagnosed 10 years ago, and I am pretty sure I've had AF for at least 25 years. It's now controlled by a small dose of flecenaide, and I am careful not to over stress my heart - exercising regularly in a controlled way, but no triathlons or crazy bursts of cardio stress.

Bagrat profile image
Bagrat in reply toThomps95

Can I ask what your small dose of Flecainide is Thomps95

Thomps95 profile image
Thomps95 in reply toBagrat

I take 50 mg twice a day - my EP now wants me to halve that. I guess he thinks I've been over-prescribed. But that will mean breaking the tablet in half because 50 mg is the smallest dose, and it works best if you take a dose twice a day.

Bagrat profile image
Bagrat in reply toThomps95

Thank you. I am in the care of my GP and I too take 50 twice a day. I have been considering asking her if I could try reducing again after no episodes since my reduction in September 2016. I've not had any other treatment.

RoyM profile image
RoyM

I had an episode completely out of the blue...no high blood pressure and no other health problems. Mine did progress a few years later. I am now in persistent AF. Luckily, symptom free and and normal ish heart rate. Apart from taking Apixiban I take no other medication. Never a truer word. We are all different.

MarkS profile image
MarkS

I had lone AF. Over 25 years it did get worse. Eventually when the AF was up to around 75% of the time but was still paroxysmal, I opted for an ablation which was successful (now nearly 8 years).

Similar to MarkS , my lone AF did get worse but it took a long time. A big BUT though is that although it took a long time, it accelerated, so towards the end of the bad period, I went from occasional bouts to 24/7 in months.

teach2learn profile image
teach2learn in reply to

Me too.

Thomps95 profile image
Thomps95 in reply to

Koll, am I correct that you had an ablation and now do not get AF episodes? Or do you still get them?

in reply toThomps95

Yes, I had an ablation 12 years ago. AF came back a little after 8-9 years, so back on drugs now. I'm not totally sure, but I'd say I have some AF but mainly, without the drugs, I get constant ectopics.

So as I have said before, I think my ablation is still working, just not totally.

Bob56 profile image
Bob56

I tend to agree with baraba52. Lone AF does tend to be progressive, but so much depends on your physical health, age and lifestyle. I moderated my lifestyle to reduce the effects of AF over 25 years, watching diet, giving up smoking, less and eventually no alcohol, caffeine free, less big spicy meals late at night, and so on. Some of these measures won't work for everyone and others won't wish to compromise, although I didnt do the above all at once. Eventually the AF broke though more and more often and I had an ablation which, for me has" reset the clock" again. I'm not AF free but it's under control once more. Much also depends on how the AF manifests itself and how you cope with it. I now work with it and around it and agonise far less at my misfortune for getting it in the first place! It's easier said than done, but a positive mental attitude is so important in managing AF, and many other conditions I imagine.

CDreamer profile image
CDreamer

I thought I had Lone AF - until I found out about the links with underlying conditions - so mine became progressive.

Such a complex subject.

CDreamer profile image
CDreamer in reply toCDreamer

We were told at a talk by an EP yesterday that there is an avalanche of AF, discovered and I discovered and that the future in treatment is likely to be around supporting lifestyle changes. Already happening in some places.

BobD profile image
BobDVolunteer

I think that in the very young ,AF episodes brought on by binge drinking may well not be repeated IF LIFE STYLE CHANGES ARE MADE. CDreamers comment beat me to it but to expand on that subject ANY treatment is likely to fail if changes are not made. One of the specialist nurses was saying that it is so depressing to see patients ignore advise re weight loss and life style changes when they know that the planned ablation will fail within a year as a result.

Alan_G profile image
Alan_G

Is there anybody else like Thomps95 who can report that their Lone AF has remained constant and not debilitating ever since they were diagnosed with it? I have seen blogs written by people with Lone AF saying they have just had one or two episodes a year and then gone up to being in AF more than they are not, almost overnight! If it's going to progress, you'd hope it would be gradual. It would be just nice to hear of the cases where it has not been progressive to give a little hope to those of us with Lone AF that is not too bothersome at the moment.

I have never had an episode as bad as the one in 2012 that had me rushing to A&E to be diagnosed with it. Maybe the bisoprolol has spared me any more of those episodes. My track record since then has been 2 or 3 a year. I went the last 8 months of 2016 without an AF episode but then had 3 in the first 2 months of 2017. This is the start of it I thought. I've not had one since, so going on 10 months now. All I've done differently in that time is double my daily intake of Bio-Magnesium and halfed my bisoprlol intake daily to 1.25mg. I do get the occasional ectopic or run of ectopics which are scary because they feel just like an AF episode but staying calm and regulating my breathing seems to get rid of them.

My theory is that you are most vulnerable to another AF episode after you have just come out of one. The longer you remain clear, the greater the likelihood you'll stay clear of further episides as if you're giving your heart time to forget about them.

I've no regrets at the moment about not putting in for an ablation as my life has not really been affected too adversely with this. I'm aware this may change though. They say the longer you delay having an ablation the less likely it is to be successful, but I look at the other view in that the techniques are undoubtedly getting better and new technologies are emerging and so ablations themselves you'd expect to be getting safer and more accurate. There's also the case of new technologies replacing them. There was a paper published last year I think that spoke of research into a method that was non-invasive and that would take minutes as opposed to hours. It worked similarly to an xray in that a beam would be directed through your body to the affected part of the heart. Sounds like science fiction but it was a genuine paper that somebody on here put a link to.

UScore profile image
UScore

I guess one thing to consider is that people who have the odd episode of AF and then it goes away, or gets less frequent, are less likely to hang around on forums like these. You are more likely to be talking to people who are dealing with it regularly, and looking for information about what to do next.

Bagrat profile image
Bagrat

I'm one who hangs about on this forum in spite of episodes since the first two, being several years apart.

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