I have paroxysmal AF which is now persistent (over 7 days continuous AF only resolvable to NSR with DCCV cardioversion). I have had 3 ablations for AF and 1 for atrial flutter. Often my AF is resolvable with a PIP (flecainide) however in recent years a DCCV cardioversion has been needed more frequently to get back to normal sinus rhythm. I run, exercise, keep fit generally. I avoid all triggers such as alcohol, caffeine, dehydration and get good sleep. I have a very enlarged right atrium which may be genetic but certainly doesn't help the situation. I am anti coagulated and very careful in that respect having had two minor strokes. My question is if any/many of this group are in mid sixties or younger and 'fit' and have finally given in to the AF and accepted that by being in permanent atrial fibrillation, life is more certain? With no unpleasant rhythm control meds, ability to have the occasional drink, and many less worries as always in AF anyway, is this a sensible choice for some when eventually they have had to give up normal sinus rhythm? I understand from sites like afibrunner.com that it's quite possible to lead an active (athletic) lifestyle while in permanent AF and would be really interested to hear your experiences. Thank you.
Persistent/Permanent AF in preference... - Atrial Fibrillati...
Persistent/Permanent AF in preference to Paroxysmal??
Hi gorpo59,
Reading your post one thing jumped out at me. It did so because I am responding as an old git beyond 75 , closer to 80 who maybe regarded as totally unfit BUT is well anticoagulated, and well medicated and who doesn't exercise .... and is probably on the slippery slope. If I am it won't be because of AF.
I was diagnosed with paroxysmal AF at 65 in January 2010 by Sept 2011 I had consulted a Nutritionist who advised me on diet which I followed and have expanded on. Can't remember my last AF event, at least 18 months ago. Had no cardioversion ( I attended for one but when they checked me out I'd reverted to NSR of my own accord). I've had no ablation.
So, I apologise in advance .... BUT .... why not add running, cycling (if you do it) , exercise generally and any other keep fit practices you may induge in to your list of triggers. Hand on heart .... can you really say your health practices are doing you the world of good ?
Thanks for this. With this in mind, I have gone through periods of 6 to 12 months to try to see if that could be the case but I'm always reminded by 'those who know' that I might not be here at all if I wasn't in a very healthy place generally (ie pipes all clear, weight good, BP good, heart structurally good). So while one never really knows... I've had AF off and on since teenage years, developing considerably in my 40s. Now 64.
Well that's brilliant - not that you've had it so long, not so good, but that a healthy life style has worked for you. The only reason that I made this suggestion is that over the 13 years since I was first diagnosed I have read many posts on this forum and its earlier now defunct incarnation hosted by Yahoo ( back in the day) that many healthy lifestyle followers, i.e. cyclists, runners of all levels from joggers to hobbyists to professional athletes and in some cases air force military pilots are all candidates for our friend AF.
Then there is the issue that crops up every so often of genetics !! Many find that AF follows some family hereditary lines. Certainly true with my paternal side of my family.
true in my case too.? My elderly mother has been plagued with ectopics and the odd short run of flutters since her early 20s. So too as her sister ( my aunt)! Her son has as well.( my cousin) I started in my late teens which progressed ( changed) into AFIB at age 45.!! I’m now 55 and have had 3 pvi ablations. I’m a lot better than I was but I know he’s still hanging around lurking.? 😡
Hi Gorpo
I’m 58, in persistent AF and have been since February this year. I was paroxysmal for some years before that and very symptomatic with episodes but now I often forget I’m in AF. I’m only on a rate control med, currently Verapamil. Not anti-coagulated yet as I only score 1 on ChadsVasc by dint of being female and apparently, having AF on its own doesn’t add to the risk score until I get to 65.
I don’t do formal exercise as such but am very active with gardening and diy projects, plus caring for my elderly mum. I’ve recently cut my hedges all round, first time I’ve done that whilst in AF. I was dubious whether I could but it was absolutely fine and I have a lot of hedge to cut!
Speaking personally, I’m much happier and more relaxed in constant AF than I ever was when it was paroxysmal, as I was constantly wondering if every little flutter was the start of another episode. My EP is listing me for a cardioversion but I too, have an enlarged right atrium which doesn’t help matters and he said himself that if I do go on to have an ablation it won’t last more than 5 years due to that and other factors. However, he’s keen to try the DCCV just to see if I can hold NSR. I’m still pondering whether I’m going to go ahead with that or not, in the circumstances.
Apologies for the lengthy reply but, in short, I think there are plenty of folk like me knocking about in constant AF and leading happy lives regardless!
All the best to you in your decision making, TC
That’s really interesting. Particularly the enlarged RA - mine is described as ‘severely enlarged’ and they’ve never decided if AF caused it or if it is genetic and has left me pre-disposed to AF. It hasn’t got any bigger though and valves/pipes all good. You sum up my thinking, that the lack of anxiety and doom mongering by knowing you’re in AF all the time perhaps is worth considering if only a marginal drop in ‘efficiency’. By the way, I was your age when I had two minor strokes (permanent damage but I got away with it and was very lucky). I had been in AF overnight, which then converted and 2 days later I couldn’t formulate words. Day in hospital, a couple of peanut size bits in brain knocked out, and I recovered very quickly. I’ve been on Apixaban ever since with no issues but I’m very mindful of the stroke risk of anything more than a few hours in AF. Everyone is different but maybe worth a thought.
Yes the ablation message is true although definitely worth doing for flutter, not so great for me at least with the AF. They’ve said they won’t do any more.
Thank you.
Mine is only moderately enlarged at the moment but I also have a moderate leak on the tricuspid valve. It’s chicken and egg as to whether the enlargement caused the leak or vice versa. Either way that and the fact that both my parents and other relatives had AF made it a bit of a foregone conclusion that I’d end up with it. Still, there are far worse things to have!
Thank you for sharing your back story regarding your minor strokes. I’m pleased to hear you made a good recovery. It’s certainly at the back of my mind but, for now at least, I’ve been told that the risk of a major bleed on the ACs is greater than the stroke risk at this stage and I was in persistent AF at the time. I do wonder if the switch from one state to another plays a part . In any event, I will have to go on them if I decide to go for a DCCV, of course.
Thanks again TC
Until today when I have reverted (Cardioversion) I had been in persistent AF for some 9-12 months. I am a keen cyclist and used to ride 160-180 miles per week at an average of over 15mph. Being in persistent AF made me reconsider and whilst I still cycle it's at a reduced mileage and intensity now more like 120 miles and 13mph. Listen to your body and act accordingly but live life as best as you can. I've had 2 ablations in 2010 and 2018
Well done on the successful cardioversion and thanks for the information. It’s not clear cut as you’ve indicated and I guess you still have an option on further ablation if needed to keep you in normal rhythm for next few years. I’m reassured to hear that you were keeping pretty fit while in AF though.
wow. That’s great Gordon. I’d be well pleased with myself doing that many miles a week. I got a cycle through the cycle to work scheme and was raring to go. Nice new bike, helmet, gloves the works.!
I got half a mile down the old railway cycle track and a jack Russel terrier decided it didn’t like cyclists.? It came at me like a scud missile, clamped onto my lower trouser leg and didn’t let go until I ended up woven into a bramble bush.!! My bike has since been hung up in the garage unfortunately.!
Please don't let that bike get rusty. I find the freedom of cycling really helpful not to mention a great stress reliever. It doesn't matter how far or how fast just do what you can. Try and find a cycle buddy to go out with too as for me it's as much about the social aspect as the fitness. British cycling have some guided rides which are a good starter
I’m late sixties. Only diagnosed early last year, but it was already becoming persistent. (Though only striking about once a month.) In October my PIP (second time used) didn’t work. I had been told to attend for a DCCV if that happened, but even armed with a letter was just given extra Flecainide and sent home once the rate was under 100.
Never came out of the episode, and an ablation late last year lasted less than 48 hours. I’ve been told that more ablations would be very unlikely to work, and that even DCCV would entail years on Amiodarone.
So now I’m on rate control. While I was really upset initially, I’ve realised that I’m doing not bad really. Those sudden dips in HR when I reverted to sinus rhythm have gone. At first it felt a drag to walk uphill or upstairs, but that has also improved a lot.
I’m not the super fit type, sore back curtails walks a bit - but I do stay active and get out for a decent walk each day. Only a few pounds overweight and no other ‘risk factors’. Glad to be on anticoagulants, and I just get on with things really. I think it was walking up a castle tower (slowly) on holiday in April which made me decide I wasn’t as bad as I thought.
It's interesting how quickly things adapt. I'd be happier in many ways without the constant anxiety created by the fear of AF. I'm not on rate control as the rate seems ok and they've told me to go by how I feel, not monitors. We'll see how this develops. Did you stop the flecainide and what rate control did you end up with. Yes I had amiodarone once after a hospital stay and it took a year to sort my thyroid (over active as a result). Appreciate your input. Thanks.
I’m on Bisoprolol, 2 x 2.5mg per day. According to my watch, my resting rate is in the 50s, though average over day is 80s. When out for a walk it’s around 100 -120. Higher than in sinus rhythm, but ok.
Stopped Flecainide before the ablation. As part of a study I had a cardiac MRI which showed reduced heart function, and was advised to stop the Flec . Went on dronedarone again for a while after the ablation. The anti-arrhythmics just didn’t seem to do anything for me.
I would love to be in NSR, but I’ve found that accepting this and moving on is all that I can do. If the rate stops being controlled then the next option is pace & ablate.
Thanks. That all makes sense and the pace and ablate point is worth noting. I was trying to think why pacemakers become necessary but of course if in AF and rate isn't controlled by meds then the pacemaker is needed. Hoping either way that I'm some distance from that decision. Thanks again.
They are also used if someone has such a low heart rate that medications given for AFib would mean going into bradycardia. So they have the pacemaker plus medications.
With pace & ablate, you become dependent on the pacemaker.
Many people are much improved with it, but I’m not at that stage yet - as luckily my rate is controlled.
Thank you. Yes, I hadn't thought of the bradycardia side of things. Hopefully a bit away from any of that and I hope same with you. Thanks.
hello. I was 17 years with paroxysmal af. I am too heavy for ablation. Earlier this year my af became persistent, slightly fast (120 bpm). In a way I was relieved. It is so much easier to live with. I haven’t been on holiday for years but I am going now.
Thank you and I hope things continue to be good for you.
I skipped paroxysmal and was diagnosed as permanent some years ago. I go to the gym and go running regularly. (Afibrunner - thanks for the link). I've spoken to 3 GPs who just said if you feel fine get on with it. In terms of performance I believe I have reached a ceiling due to the ability of my heart to process oxygen. But that's life.
That's really useful. Thank you - yes afibrunner was a bit of an eye opener to life beyond/with AF.
Wife has been in persistent AF since March and it has severely limited her QoL. Previously when in PAF she'd recognise it, ride it out and then when she self reverted got on with her life. We spoke with the consultant about how many in persistent AF can have a good QoL and he agreed that was the case for some but not all. In my wifes case he suggested her best option was to try to get back to NSR. My wife is currently waiting for a CV (10 - 12 week wait) to get her back to NSR.
Thank you.
I was in persistent AF from late 30s having started AF journey is late 20s.I finally had a successful (so far anyway) ablation Dec 22 and am now 8 weeks of NSR for first time in over a decade. So ablations can still work even for those of us in long term persistent AF it seems.
Persistent AF is often less problematic in terms of symptoms but it needs to be managed (mine wasnt) to avoid the damage to the heart structure, which happened to me. Enlarged atrium, reduced EF etc. Despite daily exercise, healthy lifestyle, diet etc.
Hope that offers a perspective. Obviously just my experience.
Thank you, that's useful to know. Yes I'm aware that if the permanent AF leads to enlargement of the atria then that can lead to the valves and other problems. I really don't know what to think at the moment but there's no doubt my body is getting used to the AF. Appreciate you sharing this.
I have now been permanent for 2 years after 14 years of paroxysmal & much prefer it. My infrequent episodes (1 - 2 per year) would always start during periods of relaxation rather than stress & they would floor me. I stopped drinking alcohol, gave up caffeine, became religious about hydration, never ate a meal within 3 hours of going to bed, & started every supplement recommended for AF. Staying out of AF had started to rule my life. Meanwhile I watched my parents, both with long term permanent AF themselves, carry on life absolutely normally, physically active, eating & drinking what they liked, not remotely bothered by it. I avoided any AF during a cripplingly painful & long bout of pleurisy in early 2020 & it also failed to appear after stomach surgery at the end of 2020 but early 2021 just as I was becoming pain-free from surgery & feeling myself again it returned for 7 hours. I assumed that must be my yearly episode. Sadly not this time. Returned 2 weeks later & I made the decision then & there to not take PIP Flecainide & to just leave it. It no longer rules my life & I’m now back drinking caffeinated coffee & having the odd beer or glass of wine & most of the time, don’t notice it’s even there. A small dose of Bisoprolol keeps my resting heart rate in the early 70s & I keep a fairly strict eye on my blood pressure but the stress of worrying about the next episode is entirely gone.
Gosh, this pretty much sums up my life over recent years. The mental toll is huge and I seem to be in a snakes and ladders game where I'm perpetually getting fit again, climbing up the ladder, only to be hit by another episode and sliding back to the bottom again. The constant care to avoid stimulants (and stress) is wearisome. I seem to be fortunate in that the rate is ok without medication and I've also been told to stop monitoring as it's all about symptoms and how I feel, not what the apple watch or chest strap (or Kardia) says. I do keep a weather eye on the watch though. I didn't find out that my dad was in permanent AF for 10 years until after he died - and he was paragliding and toboggan running in his mid seventies. I'm very glad I asked this group, all of whom have been incredibly open and helpful with quite personal information. Thank you so much.
Hi and a little update for you and a question? I had about a month of AF while waiting for a DCCV last July when I posted my original question. During that time I was told if I felt OK I could come off everything (except Apixaban of course and statins) until a week before the DCCV. This I did and surprised myself at how reasonable I felt. Heart stayed within reasonable levels, we went to a festival and walked miles! I did get the cardioversion early August and got the NSR rush of feeling great, which lasted until this week and I'm back in AF and on max flecainide 150mg twice daily. I'm now waiting for further follow up from hospital but it's likely going to be pace/ablate type of discussion, or maybe stay in AF as is while it's 'stable'. My question is this - you say you parked all your worries re caffeine, alcohol etc. Do you still need to moderate or do you find it really doesn't matter; without being stupid about it I'd love to have a couple of drinks and a real coffee sometime. I'm only 64. I do still want to exercise but it seems perfectly possible in permanent AF. Thoughts?
So glad you felt ok with it. I drink wine & caffeinated coffee daily. These days I have little desire to exceed a couple of glasses before dinner & I only ever have one or two coffees in a day so from that perspective I moderate intake but it’s just sooo nice to be able to have it! Are they hoping the max dose of flecainide might still convert you?
Interesting . I've had a letter for follow up appointment at the end of Feb but I've decided already that I won't go down the pace and ablate route. It's too permanent and once your AV node has gone it's gone - who knows what tech improvements could be around the corner? However I've agreed today with the GP that there would be no harm in dropping the flecainide for the next couple of weeks to set a 'baseline' of how I am in continuous AF without control. Past experience was that everything was about 30bpm higher than in NSR and my body got used to it. We'll see. I may still push for a DCCV but you present an attractive alternative and it's worth thought. Thank you - I really appreciate your prompt response.
Well keep me posted! I haven’t regretted my decision & as you say - interventions can come with their own set of risks & frequently not even solve the problem.
Hi
Although now in mid70s, the only AF I know was rapid and persistent.
Symptoms were excessive sweating (thyroid abnormal due to undiagnosed thyroid cancer - now removed 3 years ago). Also fatigue and stopping to allow blood to keep the oxygen moving (as if it was catch up time).
At 2 years 3 months still with no control a private cardiologist introduced CCB Calcium Channel Blocker AM and reduced BB Bisoprolol at PM.
Result CONTROLLED on meds.
I am surprised that you had ablations when you have an enlarged chamber. I am not allowed! But I am in NZ.
After year on CCB Diltiazem my H/R Day has dropped to 60s from always 47 Avge H/R at night.
I believe through experience to get CONTROLLED for H/R and BP and live out your life on as low doses as you can.
My cardiologist wants me to keep walking up my road and down to shops regularly as my heart needs exertion for healthy heart muscles. BUT DO NOT OVERDO IT.
Keep you heart exertion in moderate level and you will know.
Best wishes, live with it with acceptance of your personal levels of fitness.
cheri JOY. 74. (NZ)
Thank you for this. Yes my right atrium is v enlarged. Most ablation work is PVI in left atrium which is for me normal. That said I've been ablated for flutter and that is in the right. Keep well.
I am an obese 75 year old dis-abled veteran an ex boxer always healthy until 1992 when I started having episodes of blacking out mentally not physically and from then on was diagnosed with atrial fibrulation. I was put in the hospital for three weeks and was put on an expermental drug (at the time) called Tikosyn (dofetelide). It worked really good as I was running seven miles a day, training other fighters and feeling pretty good. Then about five years ago afib came back and I was taken off of Tikosyn and put on amidarone which is so-so as far as keeping me in sinus rythem.
Thank you to everyone who responded to my question. I did indeed get quite used to being in AF but was DC cardioverted last week and do feel better for it. Hoping it will last with increased flecainide, feels good so far. Thanks again!
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