Do hope everyone is having a good day and has been able to enjoy this beautiful weather.
I have PAF and had my first ablation 5 months ago. All was fine through recovery, some discomfort, some ectopics and loads of tiredness. Two and a half weeks ago the report was good in my post ablation consultation with the AF nurses. That was based on results from the 48 hour ambulatory ECG I had, and my report of progress. From that point I was told to stop Flecainide and then stop Bisoprolol in a further two months.
Two days ago, I had a short AF episode just after getting up and taking meds. It was quite different from previous episodes which always started in the evening and lasted for around 12 hours. It improved after an hour - after eating - and had reverted to NSR another hour later. Despite its brief duration it really wiped me out.
I’m hoping and wondering if it could be a one off - presuming my heart is still healing? I’d welcome views from those of you who have been there. I’m not stressed or upset, just a little disappointed!
Thanks so much. Lyn
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Ablation often decreases the afib burden rather than cures.
Too early to tell what your future afib burden will be, but if it turns out too much, then a touch up ablation may be in order.
As to a "one off", Some talk about a six-month blanking period, but I would like to see what that is based on. The bulk of the literature states 3 months.
I'm going for an ablation soon, and if I only ended up with a one hour episode, every few months, off medications, I'd be very happy and consider the ablation a success.
Most of the literature Jim has been written by doctors not patients. Our fact sheet on recovery puts three months as a minimum and states that many people are still improving at nine months or a year. This was from a general request here for opinions and experience of patients which I then collated . It took about six months for my orginal work to be passed by NHS England and our medical board but passed it did. Written by patients for patients it says for a reason.
Appreciate all the work that went into the patient fact sheets on ablation recovery and it certainly helps fill in the gaps left by the busy ep's after they operate on us!
However, "blanking period" has specific medical meaning, so you really can't change that meaning using some patient experiences (anecdotals) versus evidence based papers,
Underestimating the blanking period can for sure cause unnecessary anxiety, however overestimating it can cause false hopes which can result in a delay of further needed treatment.
What exactly would the EPs " evidence based" papers be based on other than their observation of their patient's experieces of ablation recovery? You can hardly do an RCT on this . You either have an ablation or you don't.
You have a good point and it would be great if we had RCT's for all our medical decision making, but that's simply not the case across the board, so in those cases "evidence based" is defined as best available evidence based on on a clinician's observations over the years.
That said, there are newer papers suggesting that even earlier occurrence of afib (before 3 months) are associated with later occurrences outside the blanking period. For anyone interested, just google "blanking period atrial fibrillation". A lot of reading and people can draw their own conclusions.
I’m also going for an ablation soon and would be happy if the frequency of my PAF reduced to a few times a year. That would allow me to go back onto PiP therapy rather than daily therapy, and I could also reconsider whether to take apixaban long term - I’ve got to take it now until 3 months post-ablation to cover the ablation period.
Those are my thought exactly! Hate those daily meds! And if the ep hits a home run, that would be a bonus! I'll also be on Eliquis three months post ablation per protocol and probably at least 2 months on flecainide and diltiazem.
I'm on propafenone instead of flecainide. Was on diltiazem too for a while but didn't feel good if I tried to exercise, so my EP (somewhat reluctantly) agreed that I could try stopping it as my resting heart rate is low and I haven't had any flutter issues. I'm expecting to stop regular anti-arrhythmics after the procedure, and I've been told that that I would be listed for a touch up ablation fairly promptly if I have issues after the blanking period.
In UK my EP kept me on it for approx 3 months, then rang me up and told me to stop the flec, but not the diltiazem rate control, 2 weeks before my post ablation review. If I had an afib attack we could have had a duscussion on that, I did not so came off all meds from that time. Almost 5 years ago now.
I am with you, Jim. Whenever I have a good day I am so grateful. My first cardioversion worked for 3 1/2 weeks but I still tell people now it was heaven. I was so grateful for those 3 1/2 weeks of a break from a fib. My first to ablation lasted six months and the second one a year. Should be out for the most Part I forgot I had a fib until it came back 😭 as you say the ablation gives us a break there is no cure. I remember when those 3 1/2 weeks ended. I was sitting on the couch and suddenly realized I was feeling the horrible thump of a fib. We need to remember ablations and meds are Band-Aids, and not permanent the majority of the time. Some people are very lucky and are asymptomatic or whatever then there are others who just can’t seem to catch a break.
We have to remember that there are people working every single day to find a way to help us with a fib, whether it’s a cure or more permanent break from it. There is light at the end of the tunnel I know because I recently saw it. I have a new pacemaker, and if it did not exist, there was nothing else to help me. It’s fairly new. I was blessed with a doctor that thinks outside the box and he is going to be teaching other doctors the procedure so more people can be helped like I am being helped.
In the meantime I wish that more people would pay attention to the doctor, or if they don’t like him that much then a new one. Afib will not go away. You can’t just ignore it. You need the right treatments from the right people. Don’t be surprised. If the first one doesn’t work, we are all so different and a fib hits us all different. Don’t play Russian roulette with your medicines or anything else. Don’t allow yourself to be put in a box marked old or obese or anything else. Be kind to the people who are trying to help you back in the living room as long as they give you the respect also. I have found being respectful and kind to have done so much for me.
thinking of you all out here I feel like I have made so many friends maybe even family out here supporting me when I felt alone
I had a second ablation last June. All fine until Dec when I had 3 episodes in a 2 week period, have had no AF since. Your Probably still in the healing stage.
Hi , I had my follow up RF ablation in August last year . After 15 days a very short episode of AF ( about 90 minutes ) quite mild . Nothing for a further 6 months other than runs of ectopics that felt like I was about to go into AF but didn’t. Since then maybe 2 or 3 times I’ve gone into AF for a couple of minutes after eating a meal but no prolonged episodes as before having the procedure . As has been said the burden has been much reduced rather than ended so I can’t complain
I remember reading a large study in which it took up to a year for some ablations to heal fully. In other trials, any recurrence during the blanking period was deemed a sign of potentially later recurrence.
The impression I got overall, though, was that there’s no easy way to know and that a full year was worth waiting to judge success level.
It might also be worthwhile asking your arrhythmia nurse or specialist why your specific AF brings on such bad symptoms. I gather it’s often because the AF makes the ventricular rate too high for the heart to remain efficient, that the ventricles react badly to the atrial over-activity or for various other reasons. I was thinking that by treating that specific cause, it might allow you heart to heal more fully?
It was because you’d written that your current AF “really wiped you out”. This seemed like bad symptoms to me and it was how I felt before my ablation for atrial flutter. I was told by the EP who treated me that it occurs because the heart is beating inefficiently.
Ah, thanks. I thought episodes made most people really tired, but perhaps not. Would a high ventricular rate be reflected in the pulse? Mine was around 88 for the duration.
I really appreciate you taking the time to reply. Thank you.
Symptoms seem to vary very widely with people, but I suppose most cope well with it overall. An older friend (now nearly 90) hardly knows his heart is in AF, even though it always is, and his pulse (i.e. his ventricular rate, which you can count on the wrist) remains in the normal range.
I think people get their symptoms mostly from having a racing heart, which can be up to 200bpm but it is often much less. My pulse is often like yours at 85bpm, sometimes over 100, and rarely at 155. With me, that causes mostly increased feeling of anxiety.
When the heart does beat very quickly, you'd think it would be pumping lots of oxygenated blood around but apparently the opposite happens and it becomes inefficient. The lack of oxygen can bring on various symptoms, even chest discomfort, as I find.
The pulse on the wrist is the same as the heart beat (the ba-dum feelings are the valves closing, not the heart pumping, I gather). In a few people, the wrist can give a low reading, however and an ECG device is needed to measure the ventricular rate accurately.
With tachycardia, and a heart rate of 150 s I can tell you firsthand about not having oxygenated blood. Since the end of last April I have barely been able to shuffle across my kitchen floor and when I did, I had crushing pain in my chest I felt like I was going to black out and so much more. I could barely lift my arms and I had pain to the tips of my fingers. I have had no appetite and it wasn’t even fatigue like you could sleep. It was just the worst feeling you could have in your body of exhaustion and nothing would make it go away.
When the heart must pump that hard. It has to decide where are the most important places her to send that blood loved it my coloring was a muddy gray and if I had any feeling in my feet or legs, it was pins and needles. Most of the time they just felt it no matter what I did with them and they were ice cold all of the time.
Thats the reality. Another reality is your heart can only do this for so long. After my second cardioversion in December, which failed after three shocks it was found that I have started heart failure. As my EP said both my heart and I could not take any more of this. Something had to be done. So long story short now lol I have a six week old pacemaker with AV node ablation and it’s the best thing ever with no regrets. This past week just since Wednesday I have started feeling amazing. I thought I did before but it was coming and going. I did what my doctor suggested about my medication’s. I started Thursday and that was the first day of my new life, I think, as if I turned a corner . No I don’t know for sure because none of us know, but I am going to enjoy the feeling. I have as long as I am allowed to have it.
Funny thing about blood pressure is that I tend to run low normally even when I had the high heart rate. In the hot weather, I can actually canceled because my blood pressure drops.
We are definitely all different
Before I left Florida there was a new American heart association campaign on TV. It’s about a fib and it’s called “ no time to wait“ you can find it online. I wish I had seen that before I had a fib. I feel that anything has not been put out there like it should considering how many people have it. They say over 6 million and they expect that number to double.
Your philosophy is a good one, Dawn. You've suffered a good deal but it's good to read that you seem to have turned a new leaf and found a whole new and much more exciting chapter ahead!
Oximeter is giving good readings so I assume all is ok. I’m going to ring the AF nurses for reassurance; I’m told my heart is in good condition, I generally walk at least an hour every morning, eat well, don’t drink alcohol, keep hydrated etc. At present I’m minded to think it’s a combination of post ablation tiredness, AF episode and wretched Bisoprolol - which has always caused me tiredness - and has a huge impact on my body’s ability to regulate temperature.
You seem to have it well sorted! I’m fine with bisoprolol in low doses and I generally get away with 1.25mg as and when needed. The oximeter is useful but I suppose it might not give an accurate pulse for everyone when AF is happening as it doesn’t measure the electrical activity, which is the only sure way.
Yes, I agree oximeter’s use is limited, I use it as a guide. I sometimes wonder whether a Kardia would be a good idea, but my EP wasn’t in favour and I think it could promote stress in me.
I take 1.25mg Bisoprolol daily and really can’t wait to see the back of it!
I have an Apple Watch as well as two other ECG devices having tried Kardia then moved to the new Wellue AI device (this will measure an ECG for up to 24-hours and gives far more detailed information than the other two).
I find them very useful and never stressful - the reverse really. I have read on here of one or two who have become obsessed, though. If you only have “lone” AF, then I’d think they’re not necessary as you will likely know when the AF is happening. Some have “silent AF” with no symptoms at all (such as my elderly friend), but then there’s not much point in knowing assuming you are taking an anticoagulant.
People that own Kardia also usually end up -like me - buying the 6L model and then paying out an extra tenner a month to get its “advanced determinations”. I think that really is too much to ask and in that scenario the Wellue becomes far better value
Thanks for the info. Even before the ablation my episodes were some weeks apart, and yes, I was always aware of when they were happening. Sound like a really helpful tool for those with different forms though.
I had no other symptoms in AFib other than the high HR, 165 resting. I have been running at 220 to 243 bpm and if i did not have a heart monitor GPS I would not have know. 9 days after my cryoblation I developed re entrant atrial flutter rate controlled at 140bpm by 200 mgs of diltiazem. Walking lounge to kitchen made be very breathless. I spent most of the next month whilst waiting for a flutter ablation lying down as I could do little else!
Very poor oxygenation of the blood through bad pumping through the lungs??
I had AFl in 2019 and it only responded to digoxin and thank goodness it did. My ablation stopped it in its tracks, but other little beasts have now been let out of their cages, sadly.
Oximeter readings are always fine so I guess not. I don’t get breathless under normal circumstances and I’m told my heart is in good condition. At present I’m blaming Bisoprolol and post ablation tiredness!
Steve I had a very aggressive procedure last April, and I was told at the time it could be up to a year for healing. Unfortunately, it actually sent me spiraling down in Home by and I needed extra help afterwards, but even my new pacemaker and AV node ablation I was told could take up to six months to fully heal and for the body to adapt. It doesn’t necessarily mean we are in pain it just means an odd little thump here and there can still happen. It sounds like a long time but think about what has been done and the miracle of it all. Using veins and arteries or down our throats and able to fix things within our heart and implant devices so that everything works together. To think they do all of this without opening us up like they once had to do. At one time anyone with heart issues seemed to be open straight down the middle. Doesn’t six months or so sound good now? None of this is fun but to feel normal again wow.
Your story reminded me of our visiting my brother-in-law just a day after he'd had open-heart surgery for a new valve, many years ago. We'd gone in to see him and found his bed empty. Well, I can't tell you, we were truly shocked and thought the worst. Then we saw him as he was walking back down the ward from the loo, as right as rain. I'll never forget the staples down his chest, though, but he recovered very quickly and completely and still has that same valve working well.
Hi LL, I am a woman exactly your age with PAF so I think I’m a good comparison.
I had my cryoablation a year ago. I have since had ectopics and a few afib blips as follows:
I had afib at 14 weeks for 2 hours, at 20 weeks for two hours and 5 weeks ago for 5 minutes.
My EP said at my appointment 2 weeks ago that we would note this and forget it. He was delighted to sign me off with the caveat that I will go back to him if necessary.
My afib pre-ablation was ruling my life and that is no longer the case. I do think that the heart continues to heal for at least a year and maybe more.
So continue to be of good cheer and I’m sure you will do well.
Hi LL, thank you for your reply. You sound to be confident and doing ready well - that’s great, and long may it last! When you had your episodes, did they make you very tired? I’ve felt so, and not at my best following Thursday’s short episode. I’m still getting post ablation tiredness as well so maybe that’s why.
This afternoon I’ve had another 5/10 minute ‘blip’ - episode or perhaps a run of ectopics, I don’t know. How do you tell the difference?
I have a Kardia device which I suggest that you get. £99ish. It tells you and your EP what’s happening during an episode. I find it very helpful.
I have only ever had one symptom during episodes - palpitations which are a real pain, but I’ve never been breathless. I’m no expert but it could be post ablation tiredness?
I’m certainly tired! Managed a decent walk with the dog but was only an hour. Finding the balance and not doing too much seems to be tricky.
I’m not sure about a Kardia for me. Certainly just after I was diagnosed nearly 2 years ago, I think I would have used it too much for reassurance. My EP understood that viewpoint so I’ve managed without. Maybe I need to have another think!
Hi, I think you are going through exactly what I sent through after my ablation late 2018. I have had about 4 episodes of AF in 4.5 years , lasting between 4 hours and 12 hours. I would say calmer than pre ablation. But if I get 1 AF episode a year I am treating this as a huge success as I used to get 3 episodes a week. I have a much better quality of life thanks to Bristol Heart Institute. My advice- don't worry about it. I wish you well.
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