I am having a hard time justifying doing anything about my Afib since I feel really good most of the time. Even in Afib I'm pretty good except for the worrying and checking of my heart rate every little bit. I have recently backed out of an RF ablation and a Cryo ablation for fear of a poor outcome. I have some metal clips on my esophagus from surgery in 1966 and the docs are not able to guarantee that they will be able to avoid that area, or that there would't be some sort of reaction during the procedure. I am considering looking into the Pulsed Field ablation in the future as it states that it does not create the heat of the other 2.
But my purpose in this post is to ask if it is such a big deal if one does end up in permanent Afib. There seem to those on this forum who are doing quite well with it.
I am 77 and healthy now so I'm thinking it might be best to leave things alone for now, or least wait until Pulsed Field is more available.
I would appreciate any and all thoughts from those on this forum. Thank you - Joye
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I had 3 ablations but AF still persisted. After quite a few cardioversions I was told I wouldn't be offered anymore and was left in constant AF. That was just over 4 years ago, my heart rate now is fairly low, bouncing between 60-90bpm and I feel fine and live a normal life.I think, as you feel well you would be wise to stay as you are now.
Was your heart rate always low or did it sometimes get over 100 in previous episodes? I understand the severe symptoms are mainly when one is constantly in high rates!
My heart rate would go up towards the 200's and I would often end up being admitted to a hospital ward. Once and only once I had to fight to keep conscious while sweat poured down me.
Atrial flutter, when my heart stuck at 150 made me feel dreadful too.
When I used to walk up a hill my heart would bang in my chest, I had no idea that other people's hearts didn't do that, my first ablation cured it.
I had three ablations and also changed my diet drastically. Artificial sweeteners and additives were a sure trigger for my AF but it took me ages to discover that.
So although you are in constant Afib you think the 3 ablations are the reason you have a lower heart rate during Afib which must be less symptomatic than before, right?
I have no positive idea whether its because of having a third ablation or changing my diet that has given me a lower heart rate. I had a few cardioversions after the third ablation and my EP said he wouldn't offer me anymore and that some people were helped by ablations but I was one of those who wasn't. It was also discovered that taking the drug Amiodarone had damaged my thyroid and made it underactive. I thought the weak, lifeless way that made me feel was all part of AF, what a surprise it was to get my energy back when given medication to right this.
Thank you for explaining. During my episodes my heart rate is around 130 and I feel symptomatic that’s why I was curious if you knew how you heart switched to a lower rate when you developed constant Afib as you mentioned earlier.
I went on to a more plant based diet and reduced my intake of red meat.
I start my day with a glass of warm water, followed a few minutes later by one of orange juice. Then a little later have my own made each morning buckwheat, fruit and seed hot breakfast (can supply recipe) alongside that I take my vitamin pills with another glass of water. For many years I tried hard to eat brown bread, but my stomach really didn't like it and nor did I. So I now have white bread. I have a white roll with a filling of my choice and an apple for lunch. Evening meals are cooked by me from scratch.
In between meals I eat mixed nuts and fruit. I'm not going to pretend that I'm the perfect person though. I get days when I'll have a doughnut, crisps or biscuits (or the whole lot on one day) I really fall of that perfect perch, but once the goodies are gone that's it I'm back to being goody two shoes again. I rarely have alcohol because I'm too afraid of the sulphite in wine etc that can trigger my AF.
I have two friends he's 86 and she's 84, what a good sparkling example they are for me. About two years ago they put up a shed in their garden, she mixed the concrete - he laid it and together they put the shed up. They've done things like that together all their married life. They made me realise that activity is important to keep you fit both mind and body wise. Honestly, I'm in awe of their agility and sharp minds. They eat white bread by the way and always have. He has ice cream for dessert most days too, but she cooks their dinners the good old fashioned wholesome way.
Any and all treatment is for the most part only for quality of life so if you feel good, your heart rate is well controlled and you are anticoagulated I tend to agree with your idea. Many people actually find permanent AF much easier to deal with anyway since there are not violent switches.
Hi Joye, I’m in persistent AF and have been for nearly a year now. It sounds bizarre I know but for me, being the anxious type I am, this scenario suits me so much better than the rollercoaster of paroxysmal AF. I was forever tiptoeing around worried about triggering another episode but now, for the majority of the time I forget I’m in AF at all! I currently only take a rate control drug but will add an anticoagulant when I get to 65 , or if I develop any of the conditions listed on the ChadsVasc risk calculator before then. I appreciate I’m fortunate that AF doesn’t affect me much in that my body seems to have adapted to my heart’s whacky rhythm. It sounds like you are reasonably ok in AF too, anxiety aside! Obviously, you will decide what’s best for you but as I say, for me, persistent AF has been ok.
Thank you so much for your reply! Am an curious about your not taking a blood thinner. I have heard a stroke is the biggest risk for those with Afib. How does persistent differ from permanent - they sound almost like the same thing.
Yes, that worried me to begin with, I must say. However, it was explained to me that having AFib by itself doesn’t increase stroke risk but rather, it’s whether you have additional risk factors as well, such as high blood pressure, increasing age, diabetes etc. as set out in the ChadsVasc risk assessment guidelines. Any of these factors, combined with having AF, increase your stroke risk. As you know, taking any medication is a balance between benefit and harm. I’m 58, and don’t currently have any of the additional risk factors, so, for me at the moment, the risk of an anticoagulant causing a serious bleed is greater than the risk of me having a stroke. As I say though, that will change with age and I also monitor my blood pressure etc to keep an eye on things. Just for my own peace of mind I also take a Nattokinase/Pycnogenol supplement. Unproven to guard against strokes I know but I figure it’s not doing me any harm and psychologically I feel like I’m doing something proactive!
My understanding is that AFib does increase your stroke risk. However, unless you have another risk factor then the risk of having a stroke from AFib alone is less than the risk of a "serious complication" from taking anti-coagulants (which is a low risk too) .
I have PAF and not on anti-coagulants because my only significant risk factor for stroke is having PAF i.e. my CHA2DS2-VASc Score = 0
I suspect all of this will change in due course and people with PAF alone (no other risk factors) will go on short course of anti-coagulant when they have a PAF episode. I believe it is currently being trialled. Watch this space!
Hi Joyelane. Given the existing damage to your oesophagus I would definitely wait for the pulsed field ablation to become available. If you do decide to go the ablation route you could insist on (or pay to see) an EP cardiologist who can refer you to a hospital that has pulsed field available. I had an ablation in October and am enjoying NSR following a year of persistent AF. I was quite symptomatic so it was definitely worth my while. However, I have suffered digestive problems ever since, am still on lansoprazole, and am restricted in what (and how much) I can eat. I’m waiting for an endoscopy.
However, as long as I’m in NSR I’ll see my ablation as a cure and I’m so glad I had it done!
I had digestive problems after mine and lost 7 kilos through loss of appetite . I had bloating and other problems. But it sorted itself after about 10 weeks. I believe it is because the Vagus nerve was tweaked during the procedure. I nearly had an endoscopy too but had a CT scan and by the time I was due for an endoscopy the symptoms vanished .
I had a call from my EP asking if I had moved forward since my last visit with him when he told me he would not be performing the pulsed field ablation method. He informed me that he is doing pulsed field ablation now and I am scheduled for May 31. I am scared, but this is the doc I had the most faith in. So wish me luck and a thank you to all who responded to my post.
Hi Joyelane, that’s such good news. (I love reading happy news on this forum with Sunday morning cuppa!) It’s understandable that you’ll feel nervous. We all do. But you’ll be so glad to have had the procedure done and with an EP you trust - that’s perfect. Because AF can be progressive you have definitely made the right choice.
The oesophagus problem that I spoke about cleared up completely. After seven months I’m still in NSR and have not needed a touchup ablation.
Please do let us know how it goes. And get in the habit of lots of relaxation and breathing exercises to help the healing. People seem to think they can plan holidays three or four weeks after an ablation or get back to work quickly. From everything I’ve seen and heard it’s really not worth it and you owe it to yourself to plan a good few weeks resting up! Good luck!
I would stay as you are. My husband is in permanent AF and completely unaware of it. He is 76 and was diagnosed about 4 years ago, initially by me with my Kardia device. He is taking Rivaroxaban.
I am another getting on just fine now that AFib is permanent. I had an ablation just over a year ago, with only 2 days in NSR. I learned at the 3 month check that further procedures were likely to be unsuccessful and not worth the risk. It has taken me a while to accept it - was really upset when I first heard!
Turns out that bisoprolol for rate control is working fine for me. I’ve had it reduced from 5mg to 3.75mg, which has helped some of the afternoon sleepiness. (Though some of that could be age.) I take apixaban - due to being female and over 65. I will be 70 this year.)
My legs feel tired at the top of flights of stairs, or the top of hills. Thats about it really. I don’t notice the palpitations now. I’ve never been super-sporty, but do like walking. Back pain can hold be back on walking the distances that I would like, but the AFib doesn’t stop me. HR goes higher than I would like if I run for a bus though.
Of course things could get worse, but if anything my heart seems to be settling more in the last few months. Just a ‘new normal’ for it I guess! I sometimes wonder if the ablation did help in stopping the extremes of rate, or if that’s just the beta-blocker.
I would never discourage anyone from having an ablation though. It could have worked! This is just to say that permanent AFib is ok.
I’m waiting for PFA availability here in Canada too. I’m 74 and fairly healthy. My one sister had 4 ablations - none worked so I don’t really see them as much of a solution. Keeping my eye on what’s happening with stem cell studies also.
I'm a 70 year old male and discovered completely by accident in a pre op medical for knee replacement that I was in Afib in Sept 2022. The consensus was that I had been for years, it doesn't affect me outwardly, I don't get out of breath and am active every day and often complete over 10k steps daily, sometines 12/15k. I still work. I am currently awaiting cardioversion since the discovery of Afib I'm taking blood thinner twice daily and a slow relaease rate control once daily. My consultant has told me that it;s more difficult to achieve a noraml heart rythmn with cardioversion if the condition has been consistent for any length of time, if it works it works if not then I'll just carry on as I am. At hte end of the day you have to listen to the experts and make a judgement. I wish you well.
Here in the UK, if your reported 'burden' isn't high, I doubt they'd be offering an ablation. Particularly in view of your age. That said people do have ablation in their later years and do well. I might be more troubled about those oesophagal clips though! Even with pulsed field they'll ablation from the right, which means they have to cross behind (I think it's behind) the oesophagus. I'll let people here who are in persistent AF report. My understanding is, so long as you're anticoagulation, and are otherwise healthy, there's no danger.
I've had PAF for around 15 years and was formally diagnosed in 2014. I explored various options (including ablation at the Royal Brompton in London) but have chosen not to intervene at all — not even with anti-coag. I do a lot of fairly vigorous exercise and so regularly weigh up those benefits/risks. On balance the risks of an internal bleed currently outweigh the benefits. My GP agrees. That may of course change as I get older — 70 this year.
This is such a personal journey and — like you — afib rarely interferes at all significantly with my life. It's just become part of who I am now, and I accept that it'll slow me down (but not stop me) if I'm competing during an episode! I also have tinnitus (the two are likely linked via the vagus) and I'm only aware of that when I tune in.
My overall approach to health and wellness is to stay clear of mainstream medicine as much as possible and instead to throw resources at the best (mostly organic) food and supplements my budget can accommodate. Plus the exercise, of course. Add in some complementary therapies, and it's working for me ATM! One cold (albeit a belter, back in November!) since November 2019.
Good luck — and as I say, we're all on our own personal PAF journey...
I was reading recently -can't remember which site!- that NAC N acetyl cysteine can help with tinnitus. I suffer from this very mildly- sounds like a doorbell ringing in my ear - the intensity varies. Recently I doubled the NAC dose I take every day because I had a bad cough ( first since March 2016) and I noticed that the tinnitus had gone. NAC also has some blood thinning properties and helps the immune system.
My husband has been in permanent AF for years and has no symptoms to speak of. He has other heart conditions but only very occasionally is he aware of his irregular pulse.
l think if l was stable and felt ok, l would stay as l am. I wouldn’t put myself through all that unless l was very much younger. There is no cure and nothing is guaranteed. There comes a point ……….. Take care.
Such a personal choice! The only reason I persisted with ablations was because my heart rate was high while in Afib, which finally was termed persistent since it was only calmed a bit by meds. Instead of 160-220 bpm, the meds would bring it down to 140-160bpm. As a result I was growing more and more tired. My last ablation was PFA and was successful going on four months. Still in something of a grateful but surprised state after 13 years of AFib, flutter and A-tachyardia. Hoping you can find peace with your choices - that is all that matters!
At 79, I've been in persistent afib for two or three years now (and consider it permanent), and it is much less burdensome than the paroxysmal I had for the 7 years or before. Frankly, I'm not even aware it's there. I have adapted completely without all the ups and downs. My resting heart rate is around 75-80 (was around 60 in NSR) and am asymptomatic. I take apixaban and diltiazem for heart rate. Permanent is a big improvement.
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