I was diagnosed with AF in January 2021. Three weeks ago I had my fifth ablation. It was quite a lengthy procedure as my EP hunted down two rogue circuits in inaccessible places. But I left the hospital in blessed sinus rhythm with a heart rate consistently in the 60s.
However, I woke at 3am yesterday with that all too familiar thumping in my chest and my Kardia confirmed that I was in ‘Possible Atrial Fibrillation’ My heart rate had gone up to 135 and I felt absolutely wretched - breathless and nauseous on the slightest exertion. Disappointed doesn’t begin to cover how I feel, especially as my EP has said that this was the last time he would perform an ablation.
I have informed my EP and am awaiting his response but meanwhile, I would really appreciate any observations or advice from members of this forum. If I sit quietly, I feel OK but the slightest exertion leaves me exhausted and breathless. I have to sit down to recover. And my heart rate remains between 110 and 145 bpm.
I am taking 180mg Diltiazem morning and evening as well as Ramipril (5mg and 2.5mg morning and evening), Rivaroxaban and Furosemide.
Any words of encouragement? I’m feeling very down about this latest setback as my quality of life has yet again been severely impacted. Is there any light at the end of this very long tunnel?
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frankiec5
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AF is an unpredictable tyrant and my sympathies are with you, I now have 30 years experience of it in all its guises. Don't give up just yet, you're still in the blanking period (see the AFA's post-AF info sheet on their website under "Resources".
Now, I have recently learned that, although the blanking period is a time where the heart can settle and revert to normal, it has been found that it is sometimes best to give it some help during the blanking period and not just let it be and hope.
In terms of that, Diltiazem mainly (I believe) slows conduction from atria to the ventricles. I'd be asking if Flecainide is appropriate and could be prescribed, since it's suited to fast atrial rhythms. I was discharged from my ablation 7 weeks ago on 100 mg/day of Flec and 60 mg of Diltiazem. I was also disappointed I was still getting a lot of, in my case, ectopics, but upping the Flecainide to 200/day this week has seen a miraculous improvement.
Flec has some limitations, is not always appropriate and your EP will know these, but I hope you get an answer asap!
The last time I read a study on this, the "blanking period" those doctors came up with, i.e. the period when a recurrence did not signal a likely return of arrhythmia, they calculated the period was up to six weeks or so (i.e. much less than many say). That means you are well inside even that revised version thus, I expect all will be well. Still, you must be feeling awful about this.
I do feel for you. It's one of those things but one thing is certain, and that is that your heart, at the very place that caused your arrhythmias, is still "healing" (i.e. forming scarred areas) that should, once healed, block the errant signals in their tracks. It's no surprise some arrhythmias happen while this is in process but, as you say - how long this is we'll never really know without a crystal ball.
You might want to see if you qualify for a surgical ablation. They can sometimes work when catheter ablations cannot. Some here I've had success with Dr. Hunter.
Dr. Steven Hunter, consultant cardiothoracic surgeon at Northern General Hospital in Sheffield, UK. 
I think I’m feeling despondent because I’ve been in this situation so many times before and have never reverted to sinus rhythm within the blanking period. Maybe this time will be different? I really hope so!
My persistent AF returned a couple of weeks after my ablation a year ago and I was offered a cardioversion to settle it down. This was completely successful and I’ve not had AF since. In the past cardioversions didn’t keep me out of AF longer than a week so I think this time it just gave the heart a chance to settle back to its “new” sinus rhythm.
I’m hoping my EP thinks that it’s worth trying a cardioversion again. It only worked for a couple of weeks after my fourth ablation but maybe this time will be different 🤞
All fingers crossed for you frankie, it must be so disheartening. I did also speak to my EP about mini maze procedure and he told me in UK it’s normally only given to people for whom ablations have failed. It’s a procedure that seems to be developing all the time, and in your shoes I think I might pay for a second opinion. In my experience the more eager you are to have something done the more likely they are to offer it! And by paying for a consultation (not the treatment) I did have the advantage of a good long appointment. I do hope things settle down on their own!
Take a look at the Sheffield Arrhythmia hospital leaflet about post ablation expectations. Though after 5 you must know it all anyway? But it describes most of what is happening as normal 😊
I know that this often happens in the blanking period but I suppose my previous experiences of not reverting to sinus rhythm are colouring my response to this latest setback.
I shall have a look at the leaflet and thank you for the suggestion
I'm sorry you're feeling like this - it's such a disappointment when one's hopes are up. Are you in the UK? I've had 2 ablations, with the 2nd being successful and after 19 months it started up again. Not so often, not nearly as bad, but still around. I discussed a possible 3rd ablation with my EP and he said - problem is with fibrosis of scar tissue - a natural part of the ageing process. Apparently this makes it easier for AF to forge new pathways. So you can chase and chase, but there's no guarantee it won't happen again. It gave me pause for thought!I know you're in the blanking period and maybe it'll settle down - I really hope so. But what my EP said made sense and I'm guessing if mine gets worse across the years I'll ask for pace and ablate. Many people here report well of it, so perhaps something to discuss with your own EP as an option?
Yes, I’m in the U.K. And thank you for taking the time to respond.
My AF is persistent so I don’t have episodes as such. It’s there all the time sadly and this time, I’m finding it very debilitating. I’m still waiting to hear from my EP but I know that he won’t suggest yet another ablation. I’m rather reluctant to go down the pacemaker route but that may be my only option if there is no change. I really want to regain some quality of life.
Here’s hoping your AF doesn’t impact on you too much. Good luck x
Having a pacemaker inserted is the easiest procedure and apart from a few rules like not stretching your left arm up for a few weeks, I personally didn’t feel a thing snd the surgeon chatted to me all the way through which was probably less than 20 mins. No soreness afterwards and just knowing no more falls snd light head and it was set at 60 but pulse never gone beyond 74 or under 60. Don’t even know it’s there I know lurking underneath afib:flutter still there I’m not aware of it
Thank you so much for that very reassuring reply. I really appreciate it. It’s good to hear that having a pacemaker fitted isn’t as scary as I had assumed … and more importantly, that it works! Thanks again x
I had a double ablation in 2022. I was told to stay on flecanide as a daily dose for the 3 month period to retrain the heart .I'm still on it but now it actually works whereas before it had started to not stop episodes.
Omg! I've just had my fourth (and final) ablation after being stable on amiodarone since early 2023 (previous to that three ablations in 20 months plus a dozen cardioversions,,). Exactly the same is happening to me. Papworth arrhythmia nurses said don't panic, it's normal but it is nerve jangling. I send you a big cyber hug (if you don't mind) and let's hope this time works for both of us. Bestest wishes, jaja
Thank you so much for your reply. It’s great to hear from someone who has gone/is going through the same experience as myself. Makes me feel less alone if you know what I mean.
And I’m sending you a big cyber hug right back. Fingers crossed for both of us 🤞
I can’t offer any advice but have read the comments written by others which (as usual) have been on the money!
Just sending you a message to say that you’re definitely not alone…
I have an underlying heart problem (HCM) and this is the reason why I was given two chances ablation wise. (Waiting to hear if they will stretch to a third, but don’t think so).
Anyway, on the waiting list for something that I really, really didn’t want but it looks like it’s come to that now. (Dual ICD/pacemaker)
I’m 68 and like you, unfortunately have never had episodes of AFib like so many. When I’m in it, I’m in it until I’m shocked out of it. My hospital said no more cardioversions now!!
Second ablation lasted five months, back in Afib for a week so far with high resting pulse.
Thinking of you and just imagining you as you probably try to be very still and not do much, hoping and praying to get that blissful feeling that is sinus rhythm. Xx
Thank you so much for your thoughtful and empathetic response. It really helps to hear from someone in a similar position to myself. And someone who is as reluctant as myself to go down the pacemaker route. I’m very grateful to you for taking the time to give me some moral support.
Here’s hoping that the AF gods will look kindly on us both in the near future. And please do let me know how you are doing. We seem to have a lot in common x
I actually managed a very short walk (about 200 yards!) along the promenade near my home today. Up until yesterday, I couldn’t even walk across the living room without stopping and gasping to catch my breath. So I guess that’s progress. But my Kardia tells me that I’m still in afib; my heart rate varies between 95 and 135/140 depending on my level of activity.
Still haven’t heard from my EP. I rather suspect that his secretary forgot to forward the email I sent to him on Thursday last week. Hopefully he’ll get in touch tomorrow. I’ll let you know.
Not too long for you to wait until 27th November. Please do let me know the outcome.
By the way, I’m wondering whether there is a way that we can stay in touch without using this platform? I’m not the most accomplished user of technology but I do have an email address!
Hi Frankie, I'm so sorry you're so worried and anxious, it's so upsetting AF, I've also had 5 ablations and it came back a few weeks ago.You've had such good advice from this forum and I truly hope you get the answers from your EP soon.
I was in hospital with a colon infection and my HR was 180, I'd been suffering on and off with episodes, they said the infection brought on my AF (which had seemed to be under control after the 5th ablation and with medication but) as usual a nasty infection can start it all off again....I'm on different meds and I'm waiting for the 6th ablation, I'm 68 and I'm wondering if the pace and ablate would be better tbh but we're in their hands I suppose. 🙂 x
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