I am just wondering if anyone knows whether AF does not progress in some cases. We hear all the time that AF begets AF, however, I have stayed the same for almost 3 years now. I have daily episodes lasting 2-4 hours. Sometimes worse days of 7 hours or so. My EP said he had expected me to be in permanent AF by now but I am not. If I were to stay like this forever and not worsen, I will say no to a further ablation. I have suspended mine on the 20th April as I am just so unsure what to do. I am seeing the EP in 6 weeks to discuss everything but I have got used to living like this now and can cope with it ok. Any thoughts or knowledge greatly appreciated.
Is it possible AF does not progress? - Atrial Fibrillati...
Is it possible AF does not progress?
Written by
Vony
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44 Replies
•
BobDVolunteer
I always say that AF is almost always progressive because that is the experience of most people but there will always be exceptions to anything. Yours seems already to have progressed a long way if you are 20% of the time in AF.
I do wonder if you are kidding yourself about how bad you are. Many people with your frequency would be begging for ablation by now I am sure. The chance of improvement from ablation should not be ignored in my opinion. I do understand that some people find the whole concept of ablation terrifying although this has never bothered me as I had faith in my EP. Each to their own so just be comfortable with whatever you choose but make that choice on science and not fear please.
Bob
I posted the same question about a year ago if you search for a post (Paroxysmal AF) you can see the answers hope it helps
Did yours progress since then souljacs?
No I am about the same as I have always been I was diagnosed in 2014. and a few months ago I was tested and told I have sleep apnea and now have a Cpap machine I think that has helped a lot as I use to wake up in AF. I have a friend who also has AF she is 75 she has had it for five years and it hasn't progressed so that gives me hope.
I discussed this point with my EP at my last review and his response covered all the predictable pointers of cardiac health, reasons for AF in the first place and lifestyle but he felt that the determining factor was our individual cells' response - in my case, the ageing process which differs from person to person.
There are other factors to consider in having daily episodes of AF and the effects on your heart's wellbeing.
Best wishes with information gathering in the next six weeks - and all the better to make a considered decision on your way forward, rather than go ahead with intervention when you are so unsure.
Finvola xxx
SRMGrandmaVolunteer
Hi Vony, When I read the title of your post, I expected the post to say that you have maybe one episode a year and that you would be quite happy if it stayed that way and were musing about that being a realistic expectation. I was more than surprised to hear your description of the frequency of your AF episodes and your thinking that burden of AF nearly every day is doable.
As we always say here, we are all different, but what you describe is a whole lot of time for your heart to be pumping inefficiently, and for you to feel less than 100%. The longer time you spend in AF, the more your heart will remodel (not in a good way) because of it.
Do you want to cope at best or live without AF? Yes, ablation is a scary option, but living without AF is a wonderful option to consider. Peace to you as you ponder.
Thank you. That is something to consider that the heart may become damaged..though i have only had 2 echos in 3 years and the EP does not seem worried that i need more regular monitoring that way. Any general cardiologist has also told me that because my heart does go back to normal it is not a major concern. Although my heart does go quite fast so one cardiologist said she would be concerned because it is daily for a few hours. My first ablation made me worse..i was so unwell after it and in arrythmias for about 18 hours a day for a month. I was losing the will to live as i couldn't even climb my stairs and had to go up on all fours slowly with my husband behind me and he also had to help me have showers as i was so constantly dizzy. I hated that time of my life and never ever want that to happen again. I was admitted to hospital twice and away from my children and developed prolonged QT after they found the one drug that helped...so all in all it was a terrible time. It didn't even help in the long term so i don't feel convinced about trying again and at one stage my EP said he agreed with me. He said there is no golden answer for me. I have accepted my life as it is now and this is the best i have felt in a long time. Sorry to vent...bet you're sorry you commented now lol. I really appreciate the support on this forum and it is helping me balance the arguments for and against. Xx
Isn't it great to have a place to vent where we all have a good sense of what it feels like to feel that lousy, to worry about our hearts and to wonder what the future holds. I hear you about having a rough time after your first ablation. That would certainly give me pause too. And I too had prolonged Q-T on a couple of different drugs so I totally understand that frustration. Have you spoken to more than one EP? Maybe consider having an ablation done at a center that does more, or with a more expert, experienced EP than the first time? Whatever you decide we are here to listen, and glad to be part of your decision process. Have a good day. Xx
Yes, live without AF is a wonderful option to consider. The question is, would the AF stopped after ablation? The statistic shows, that about 40% of people after ablation Is requiring continue use of medication and /or 2-nd ,3-rd,and more ablations.where is the benefit?
It is more studies going on for the cases and treatments of AF without ablation as long, as people can cope.
Are you happy with your EP? I really wasn't happy with the first two I saw. so I paid to see a third. I felt so much better after seeing him do you think a second opinion would help?
While you are doing your research you might check what equipment your EP has as the latest tech makes a big difference I believe. I was amazed at what my EP (who by the way, did not do empathy!) did in a short time. I know he was using new 'state of the art' equipment but they were so busy there was no time to have a tour.
It is not something I would normally want to mention but not all EPs are equal and as Orchardworker said procedures and EPs are improving all the time. I well remember being told that if I continued to have episodes after my change of medication I would be referred for ablation 'but the longer you wait the better they get at it'. I think I would rate efficiency over empathy, we can do empathy in buckets!
The EP I see said he is going to have another EP present for next EP study and ablation for a second opinion. I think he is knowledgable and he is very empathic about the effect arrythmias have on your life and how disruptive it is. I do get a sense he is getting frustrated at times though. My friend who is a doctor said that as a medic, she stresses when she cannot give a patient satisfactory outcomes and cannot 'fix' someone and she said to remember it is difficult for doctors too.
I have had two episodes of very fast AF in 10 years. In the first case I was chemically cardioverted and in the second I underwent heart surgery for an underlying condition, after which the AF returned. I have had PAF for four years since then but it is of the slow variety. Sometimes I feel as if I have short, slow episodes every day (under 100 bpm) at other times I can go several days or a week without any episodes at all. I don't feel unwell and it doesn't affect my exercise capacity which has remained constant. So I am not sure whether it can be said that my AF has progressed.
Ablation hasn't been discussed nor have I asked. I would never say never but medication is currently my preferred option. In my case I am heavily swayed by having experienced two disastrous angiograms.
My experience has been this: I was diagnosed with paroxysmal af in 1997. I was getting almost nightly episodes of 2-4 hours. I was given atenolol and in a couple of years af went away till 2008. It took ages to get the right meds at this time (for some reason I was not given atenolol tho I asked for it) but from 2008, my sf has remained stable. I am in af less than 1% of time in a year until last year, when it went up to 1.2%. The episodes are much milder now than they were in the 90 s. Duration has remained the same, 2-3 hours, sometimes more, up to 8 times a month. I would say my af has remained virtually the same in 19 years, apart from the 'time off' I had. I appear to be very lucky. JanR
jan-ran, What is your heart beat rate when you're in episodes, is it very fast, and are you on daily meds now? appreciate the feed back.
Hi captain. I ve just checked my AliveCor, (now called Kardia). Top rate in af is recorded at 152. The rest were between that and 120 ish. Occasionally in the 90 s. I have noted that irregularity of hb is what I feel, rather than rate. Tho' when that irregularity stops, I have a short period of rapid regular hb, which I can't feel. After many med changes I now take flecainide 50 X 2, bisoprolol 1.25 X 1 and rivaroxaban, daily. Flec and bisop as pill in pocket, if nec. Hope that's helpful. JanR.
Hi jan-run
It seems that I am in the same category as you are.My episodes of PAF started rarely over 20 ears ago.At first I ignored, it was come and go without med.Usually,it happened upon the stressful situations.than my GP suggested to see cardiologist.All the test was normal.The antiarhtytmic med.,either propranolol,or amiodoron made me weel weak,create prearrythmia, and I stopped it.Ablation was mentioned,but I was not even close to that treatment desition yet.Therefore,cardiologist(s) suggested bisoprolol (though my blood pressure is normal),flecaindine and revaroxaban to prevent blood clotting.I have noticed that taking bisoprolol and flecaindine as PIP works as better adjustment and share with the EP.He was agreed.
Though my PAF episodes some times twice a week and I still can control it with med, it is scary when episodes do not stopped for a couple hours.
My question is, how practical it is to have Kardia device?
I checked, that it can be bought only throug internet.
Thanks for your post.
Hi Alemo, I find the Kardia device really useful. I use it when I have af, it is very accurate and I have printed examples out for my gp and cardiologist. They really appreciate it. It is also useful to check now and then that my heart is behaving normally in nsr. It has other functions, like info on other arrhythmias, it connects to a smartphone health app, and other interesting stuff. JanR
Hello Jan, Thank you for respond.My concern is to control the heart behaviour before and after AF episodes.And if the heart come back to NR without consequences,than the Ablation can be postponed.
That is really something you would have to discuss with your doctors. My af has not badly affected my quality of life, in 19 years. It is unpleasant, but I have never thought I needed an ablation. My son, at 46, has af too, and he is badly affected, so he is seriously considering ablation. Paulh has given a good reply on this thread. Hope this helps. JanR
Jan-ran, your feed back is helpful, thanks, best wishes.
I look at it this way. If you can live with it and the effects on your quality of life than I say keep on doing what you are doing. My afib started to effect my life slowly and not in a good way. I realized I didn't want to live this way changing doses of meds or going on new ones then having to deal with the side effects of all those meds. I decided one day enough was enough. Ablation here I come. I was hoping for a one and done but we have to wait and see. All I can say is "why did I wait so long?" I feel so much better in the mornings and in general. Slowly I'm getting back to my routine. Don't let fear hold you back . We have all been there me included.
Hi, I was diagnosed PAF 2 years ago, but no attacks for last year!! Fingers crossed 😀
Wanted to ad, not on any meds but warfarin, not convinced I should take that? As only have occasional ectopic (I am 65) never seen Ep
How is it 2 years on? No further incidents I hope?
It's been mentioned before I'm sure, one of the most important benefits of delaying an ablation is the procedures are improving all the time. So you have to balance that and all the other pros and cons - as always the decision is very individual. Good luck.
Hi , I think I would class daily AF as permanent !! - has your EP suggested you take anything to stop going into AF so often ? - I am assuming you are on warfarin or a NOAC ?
Hi dmac4646. My arrythmias are still paroxysmal. My EP said if i were in permanent AF it would be easier to manage as I would feel it less and we could rate control more effectively. I have so far been treatment resistant apart from one anti arrythmic which helped a little but cause prolonged QT. I have never been on AC therapy due to low chadsvasc score. Am on one recently as was treated for a possible TIA which it seems it was not ( i never thought it was but they have to overtreat if any suspicion)...i have severe degeneration of several discs in my cervical spinal which seems to have caused weakness in my left hand. So i may come off AC therapy. An seeing neurovascular consultant and he said it will be a multi disciplinary decision which includes me. So in short...no, i am not in permanent AF!! I have other arrythmias too so am not always even in AF.
I would like to think that there is research going on into the long term effects of ablation, the medication for AF and also the new anticoagulants. We need to be more informed about our health. We now know that aspirin is as much use as a chocolate tea pot when it come to stroke and It would be good if EP's could put some figures out there as to how many ablations they do in a year and how successful they are .At the end of the day we only have one heart and it's a pretty important part of our bodies!
I don't think that would be helpful -in fact distinctly unhelpful.
It could result in EPs being so selective they only work on the patients who are only mildly affected so as to ensure a 100% success rate on their statistics.
Also there is no absolutely definitive measure as to what is a success!!
Hi Vony,
Just getting round to tossing in my 'two bob's worth'. In my case my paroxysmal AF has not progressed. I was diagnosed in Jan 2010 - diagnosis was 9 hours from known onset and initial symptoms were feeling like I was going down with 'flu ! So, let me give you the stats ;
Earlier medical history - pretty fit, shedloads of visits over the years to A&E's due to DIY carelessness, only two cases surgery, 1) removal of right knee cartilage in about 2000/2001, onset of osteoarthritis and 2) right knee partial knee replacement in Nov 2015. All the usual ailments in life from time to time but in my early 30's I did develop some minor digestive system issues which did not progress.
Age on pAF diagnosis - 65, age now - 72 in Sept 2016.
Weight on diagnosis - 98 kgs. Blood pressure and heart rate average at time of diagnosis 136/80 - heart rate around 88 bpm.
Weight now - 92 kgs, BP etc 125/70 heart rate around 65 bpm
Medication before pAF - Bendroflumethiazide, Simvastatin, Ramipril
Medication now - Simvastatin, Ramipril and Felodipine, also Warfarin and Bisoprolol. So in effect the only medication I have which targets specifically pAF is Bisoprolol.
Genetic predisposition to AF - yes ! paternal Grandfather died from a series of strokes in 1964 but cause of strokes unknown. My paternal second cousin - AF, fixed with ablation, my daughter late 20's /early 30's - AF, triggered by pregnancies and 'lil ole me - pAF.
Triggers for AF - palpitations, bloating, burping, intestinal gurgling, diahorrea. (I'd had palpitations, sometimes quite severe, for some 2 and half years before AF diagnosed). The digestive issues emerged gradually after AF diagnosis. I could identify the onset of an AF event with food I'd eaten.
Was checked out for Coeliac Disease and IBS, seemingly all clear. Consulted a Nutritionist who put me on a course of probiotics, got me gluten free, wheat free and to follow FODMAPS diet. Around 6 to 10 months after diagnosis AF events reduced. Now - my last recorded AF event was in April 2015.
I still work, drive a bus on a shuttle bus service between an airport and a railway station, 20 minute drive each way and manual handling, passengers luggage ( not all 15 kg or less). 30 hours a week. I hold a PCV licence and therefore DVLA require me to have a medical each year to get my PCV entitlement renewed and have no problems here.
I don't feel inclined to say I'm cured - I half heartedly expect AF to return in the future as I age. But yes I sure as hell have kicked the mongrel thing into touch. So why - firstly, my very prompt/swift and accurate diagnosis right at the start. GP right on the ball, hospital A & E team, nothing short of bloody brilliant as was Cardiac Consultant. Diagnosis was 9 hours from onset. They got the mongrel right from the start and got the medication started within hours too. Got it before it got my heart ! Yes - normal atria damage (left atria enlarged) but otherwise all cardiac systems, all thoroughly checked out over the 6 days I was kept in hospital, were just fine.
So that's it. For me AF does not progress .... yet!
Hope this helps.
John
PeterWh• in reply to
John. Some of the things you state such as bloating, burping, intestinal gurgling, diahorrea may actually be the result of you going into AF!!!
• in reply toPeterWh
Hello Peter,
You may well have something here. It's a thought I've always had at the back of my mind but have not reached a real conclusion. Lets assume your thoughts are correct then I have been AF free for now over 12 months. I have been maintaining my self imposed diet for 6 years, and each year I have seen my incidence of AF reduce. However, in the beginning my consultant did remark that from the 6 days I spent in hospital they concluded that I am one of those who can be in AF and not know it. Asymptomatic.
So how do I know I am in AF then. Well I have no ECG machine, I have no Alivecor, device ... I do have a Microlife BP monitor with the AF detection device and I listen to my body.
The Microlife will only detect AF when I'm taking a blood pressure reading of course. So its back to listening to my body and it tells me whether I'm 'light' or 'heavy'. When my chest and abdomen feel 'light' I feel bloody fantastic, when I'm 'heavy' in those areas I'm pretty sure AF is trying to kick in - and this heaviness usually coincides with a meal I've eaten and the sensation of bloating. However, the bloating doesn't always lead to the other digestive issues, i.e. burping, intestinal gurgling and diahorrea. The bloating can start as quickly as 90 minutes after eating, and the side effects can last from 24 hours to 5 days before I return to normal. Its for this reason I'm tending to relate food with the attempted start of AF. Also, thinking back to my diary notes of the first 4 months after being diagnosed I knew I was in AF because my chest felt like 1 of the following ....a squadron or two of butterflies in combat; a mob of octupuses (or is it octupi) waggling their tentacles; or a mob of worms wriggling away trying to get outta my chest. Now I haven't had those sensations since between Jan and April/May 2010. Although I have had strong palpitations from time to time. I suppose with this bloody mongrel AF all one can ever hope to understand, is that it has, in many people, the ability to transform/ manifest itself in many different ways.
So for me right now, its a mystery really. Its also a condition that is totally untrustworthy and I never take my present good health for granted. As the old 'Confucian' saying goes .... the price of liberty is eternal vigilance !
I might add the latest food to hit the shag pile carpet is pork! In all it menu forms. I had some several times recently, I have well and truly tested this meat and on every occasion I blew up as if I was on a garage airline and quite ill for all of 5 days. But no symptoms of AF and in that time I frequently checked my blood pressure which jumped up significantly but no AF registering on the device. When I say my BP jumped it is normally around 125/70 with heart rate of around 65. It shot up to 149/90 with a heart rate of 88. Then after the 5th day the BP gradually returned to normal. And this pattern is always the same with 'deadly' foods 
Thanks for this discussion Peter, I'm damned if I know what comes first the chicken or the egg.
John
Nerja2012• in reply to
Carneuny. I know its 5 years since you posted but would be interested to know if your PAF did progress. Im PAF like you caught early but have very few episodes which have decreased rather than increased. Into my 8th month since the last one and 10 months before that. Hope it continues like yours did.
• in reply toNerja2012
Hiya Nerja2012,
Thanks for your post/follow up.
I am pleased to say that my PAF did not/ has not progressed over the years. Several times a year ( 3 or 4 ) I receive short sharp reminders from my dear old ticker of the original diagnosis. these reminders lasted from an hour or so thro to 4 or 5 hours, and one particular year it lasted around 12 hours. Apart from that .... no worries.
My last 'full blown' events were April 2015 and February 2018. But all I did was see my GP. No hospitalization.
So, in summary, very, very speedy ( around 9 hours from onset of feeling unwell) and accurate diagnosis on the day PAF mugged me was ( in my view ), critical to my future. Sure during my stay in hospital ablation was discussed but it was also rejected by me.
So, for me its been 3 things ..... speedy diagnosis and start of treatment, change of lifestyle ( my food plan devised by a Nutritionist ) and medication ( only Warfarin and Bisoprolol ) while staying with my original high blood pressure medication and statins originally prescribed years earlier.
Job done !!
😃What a great pity its isn't so simple for everybody.
Your track record is beginning to mirror my performance and I really hope that it continues this. Just remind me - and for the sake of others who may read this - how quick did it take for your diagnosis from the time you began to feel unwell. For me the feeling unwellness was nothing cardiac at all - felt as if I was going down with 'flu - until my BP began to fall like a lead balloon - it bobbed around but trended down and flattened out at 76/50 - then I knew it was a case of " Houston, we have a problem".
What else have you done for yourself.
Just keep on keeping on like this, well done.
John
Nerja2012• in reply to
John. What a wonderful reply and so inspiring for me and a lot of people on this site who wonder about the progression of PAF. I have an AF Buddy on this site that will also be thrilled about your reply so thanks for that. My Story ! Diagnosed in my early 20s with an abnormal heartbeat but told not to worry about it as it was normal for me, so I didnt. 6 years ago when I was 70 my other half was diagnosed with cancer, mentally I hit a brick wall, with the help of Amitriptyline ( pain relief)and half a bottle of wine my heart went into overdrive. After 3 hours I went to AE and was diagnosed with PAF, episode lasted 5 hours and self terminated. I didnt see a cardiologist and was referred to my GP for treatment and management. I had an echo and 2 day moniter . My heart was in good fettle so no problem there. I still havent see a cardiologist but after badgering my GP as its 6 years since being diagnosed I asked to be referred for a review and go in 3 weeks. I had a few episodes right at the beginning which have over time reduced to nearly nothing, on average 10 months apart. You asked about lide style changesand meds. I havent made any lifestyle changes as im a bit of a health freak and very fit. Stress I would say would be a factor so I have found better ways to cope with that , Alcohol apart from that first attack isnt a problem and I think that was why my heart reacted because apart from 1 glass of wine I'm a useless drinker. Meds, because I'm only 5ft and 52k im taking 2.5 Apixaban but that I have just recently started , thought it was about time I did. I am taking half of a 1.25 Bisoprolol at the moment as I have a naturally low heart rate and low blood pressure. Even on that dose its still low ( 120/ 56 HR 56. Im going to ask the Consultant about that as I dont think I should be taking them at all. SO that as you asked is my story John. Once again thank you for your reply as its just what I and a lot of others with PAF want to hear. We are the lucky ones and I feel for everyone out there that have been dealt with a lot more than us. But without this site and people like them it would have been harder to cope. I hope things continue as they are John. Stay well. 👍
Someone once posted on here to remind us that we are a small group of followers and as was pointed out we are probably the worst case scenario.there are millions of people world wide with AF and I hope that because of all the hard work that is being done by groups like the AF Association and others like them we are getting a diagnosis a lot earlier than we were a few years ago so maybe the prognosis will improve for all of us.
I think that is actually true that people are getting earlier diagnosis etc
Mine took 10 years and 3 T.I.A.s and a chance episode of A.F. while the stroke consultant was examini g me.
My husband now has A.F. Because i have an Alivecor we were able to record it so that although by the time he got to A and E he was back in N.S.R., the consultant could see that he had indeed been in fast A.F. He now has an appointment for my E.Ps outpatients clinic . I had to pay to see him because my G.Ps referral had taken 8 months and i still didnt have an appointment!
I never go to A and E because i am used to it all now but i wish i had in the early days because i may have gone down a much faster route to medical help.
The emergency doctor stressed that he was right to come in and said he should call an ambulance next time. Maybe they were concerned as he is not anticoagulated what do you think?
Omg ... you must not be particularly symptomatic ... if l had afib each and every day ... l couldn’t stand it ... how disruptive ... you should do whatever is necessary to remedy that issue.
As we often say our bodies are all different. However I went from paroxysmal to persistent at some time between annual specialist appointments. I have no idea when that was. I was taking Flecainide 150mg x 2 a day, plus Warfarin, which reduced my episodes to 0-3 a year, just short episodes of up to four hours. And then at the next appointment I was found to be in persistent AF, which I accepted was permanent AF, though mainly asymptomatic. In the 6 years of permanent AF I can only think of two occasions when I could really feel the AF, due to being anxious about an unrelated matter.When my AF became persistent I had no use for Flecainide so I was told to stop taking it. I continue with Warfarin. I had not been prescribed a beta blocker until a well-meaning hospital doctor prescribed it after my heart rate rose to over 190 while I was having my appendix out, three and a half years ago. Because of rare and very rare side effects of the beta blocker I was weaned off, and there's a note on my medical record not to prescribe any beta blocker in future.
As for being in permanent AF most of the time I forget I am.
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