Post Ablation AF is relentless

Only had my ablation 2 weeks ago but for the last 4 days I have been in and out of AF about 20 times a day lasting from a few minutes to a few hours. It's really starting to get the better of me, prior to my ablation I used to be in AF one or twice a month and it was a lot more bearable than this. I'm really starting to wish I didn't have my ablation now, I had such a positive experience having it done and the following week. I've taken a 100mg of Flecainide every day this week, I normally only take as a PIP. This last few days has been the most difficult experience I've ever been through, when I go into AF my heart races and I feel very symptomatic. I was told about some potential AF or flutters post ablation but this is something else! I really really hope it passes soon, but it's just relentless and making me feel so weak.

23 Replies

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  • Hi Steve,

    I really feel for you - it sounds horrible and I know what it's like to feel symptomatic - do you need to go and see your GP?

    Don't forget that you are also not used to taking flecainide every day so your body will be getting used to that,

    Hopefully it is just the healing process and might be triggered with the inflammation of the heart,

    Try not to feel disheartened - very early days yet.........What about calling the Arrhythmia nurse at your hospital for some advice and reassurance??

    Take care

    Cathy

  • Hi Cathy

    Thanks for you reply, yes I went to the GP yesterday he just checked my heart and at the time it was in NSR with 1 or 2 ectopics. But he wasn't that bothered really. He said I would be ok to take Flecainide every day for the short term, and another beta blocker if required. I've also left a message within Arrythmia Nurse. Funny thing is it's been ok overnight and just tends to start mid morning and go on all day then settle down late on. I'm not doing much as still off work so I'm not stressing too much. I can handle being in AF when my pulse is below 100 but it feels awful when it's shoots up over 150, just when I think it's stopped it starts all over again.

    If someone said we can chop your arm off and it would stop I think I would take that option right now!

  • Sorry to hear about all this Steve. I can't really comment as I seem to have been very lucky with mine so far - I do feel for you though. Could you get to see Dr Brown? He might be able to give you some help? If you can't see him quickly at Wythenshawe I had my ablation done privately (through work) and he has a clinic on Monday nights at the Alex in Cheadle - of course you'd have to pay ( I think it's about £100 - gulp) but may be better than chopping your arm off!!

    Hope it gets better soon...

    Ruth

  • Hi Ruth

    Thanks for your message, I'm hoping that the Arrythmia Nurse calls me back tomorrow and then will ask her best course of action. It funny you mention about Dr Brown's private clinic, I've sent a message today asking if I can make an appointment. I'd quite happily pay to see him at this moment in time.

    Thanks

    Steve

  • Hi again Steve

    As far as I know all you need to do is phone the Alex direct to make an appointment with him. Just say it's Monday night and Dr Brown the cardiologist ( as think there are two !) I've never had much problem getting to see him at pretty short notice so you never know!

    I also have his secretary's number if you'd like it - I think there is some way of sending a private message on here - but tbh she's not that much use!

    Good luck with it all.

    Ruth

  • Hi Steve,

    I know that is so frustrating. I had almost 2 solid weeks of nonstop AF following my ablation last year....and then none since, so just try to breathe deeply and remind yourself that it is your heart being angry from being burned (or frozen) and once it starts to heal, there will be peace . Meanwhile, try to rest and relax and do all things conducive to healing. Wishing you NSR!

  • Thank you, I've just had 2 hours of peaceful NSR and hopefully it will continue :)

  • Hi Steve, I'm 7 weeks post 2nd ablation and after 2 weeks I was having the odd episode. I was told this is to be expected. Since then I have had nothing and my life is back to normal. Hopefully no AF for a long while now, but let's see. Hope things calm down for you.

    Good luck

  • Steve , I too experience the same and it lasted almost 2 months after my ablation. I was devastated but then it started to subside and now I'm all good. I was disappointed that so many people have the ablation and never experience Afib again yet my ablation made it worse but now I realize that it takes some of us a little bit of time to heal. You will be ok .....give it time.

  • Steve, like you after reading and researching I EXPECTED some AF to return after my ablation during this 'healing process' but I hadn't read and was not advised that it could return much more aggressively and a lot more frequent than before. I had 3 weeks free then it came back and I was doing well if I had 1.5 days completely free for the next 6/7 weeks. It has now settled to approx once a week, shorter but still 150ish. Just had a cold which initiated 3 events over last weekend, but nothing since Monday. My wife more than me wished out loud I had not bothered to have it done! I got to see the EP after 8 weeks as I was worried and he said 8 weeks was around the point when he knew it had not worked. So he booked me in for a second ablation with the proviso that if the AF disappeared they would cancel the 2nd ablation. This is next week. Please try and contact your EP but be prepared for him to ask you to wait a little longer for that 'healing process.'

    Anxious times I know but hang on it there.

  • Hi Steve,

    How have you been doing?

  • Hi Cathy

    Still much of the same but has let up a little, I've been back to work today as determined for it not to get the better of me. The episodes although still daily have let up a bit, so hopefully it's a good sign!

    I'm booked in to see me EP on Wednesday to discuss, I had to dig deep mind you it's costing £150. But hopefully if anything it will give me peace of mind.

    How are you doing?

  • Hi Steve,

    I think I'm doing ok - no AF so far since ablation but am expecting it anytime!! Obsessed with taking my pulse....! Still have a tight chest like during a chest infection but hopefully that will wear off. I am still on 300mg Flecainide, 2.5 Bisoprolol so being controlled.I guess even if mine is eventually deemed a 'success' it could always return in the future.

    Hope the appointment goes well and puts your mind at rest :)

    Let us know what he says- all useful info.

  • Thats good to hear, hopefully it will stay away for you. I've just been taking my bisoprolol at 2.5mg last few days, not taken Flecainide as it seemed it make it worse.

    I've tried to stop taking my pulse all the time, it was actually making me more anxious. I've got to admit I think I have developed a degree of health anxiety over the last few months and I think I have been making things worse by obsessing.

    I've just started reading a book called 'Overcoming Health Anxiety', I personally can relate to it a lot.

    It's easier said than done to worry less though!

  • Hi Cathy, gosh..on 300 mg Flecainide a day...that is quite a lot as I was told 400 mg is the maximum..As long as you keep AF at bay, that is all it matters, I suppose

  • Hi Dayu

    That was a while ago! I'm now off all meds apart from 1.25 bisoprolol so I feel much more energetic. No AF since ablation so I have been lucky. I was getting it most days before. I do have ectopic a a few times a week but I can live with that.

  • Hi Steve,

    Just wondering how things are going for you now? You were going to see your EP privately.....any joy?

  • Hi Cathy. Things seem to have settled down a bit thank goodness, the last few days have been very good but I'm half expecting it to start up again at anytime. Hopefully this is a good sign and things will become more normal again.

    I went to see my EP last week and he was very reassuring, I took some print outs from my Alivecor and he said they were very useful and kept them for my file. One showed the multiple ectopics (8 to 10 in a row) another showed my AF in full swing at 150bpm and another showed me flipping between NSR and AF. He assured me that none of the Arrythmia's were in any way dangerous and that it should hopefully settle down. He also said if in 8 weeks when I am due to see him again things are still the same then he can book me in for a touch up ablation. I also asked him about exercise as I want to get back into it, he said no problem at all now. He said if anything it will do me good.

    I feel a lot more positive than I did last week now, so fingers crossed it lasts!

    How are you doing?

  • Hi Steve,

    That's really good news and I'm glad you feel reassured- trip to EP sounded extremely helpful. I didn't know about this Alivecor till I found this site - would have been useful for monitoring before ablation.

    I'm doing well ( I think!). No episodes of AF so far. Not feeling completely back to normal yet - chest still feels a bit weird and tired at times but definitely well on the mend so all good - appt to see EP on the 18th July.

    Trying to get back into doing exercise and in my usual fashion overdoing it - went for a 1.5 hour walk on Sat and felt wiped out yesterday! But I guess I've become pretty unfit over the past year and my mind hasn't caught up with that. Went for a 20 minute cycle the other day and although I was getting breathless my heart was refusing to beat any faster! But good to get back into some exercise and feel like my old self :)

    So all in all feels positive.

  • 3 months have passed. How are you doing now?

    I am one month post ablation and went back to Flecainide after about 2 weeks post ablation because of long hard palpitations. Still hopeful for good results at around the 3 month post ablation time.

  • Hello Barbara. Things seem to have settled down quite a bit, I've not had any af since late July. I still get quite a few days of noticeable ectopics and strange heart sensations, this might just be down to me being highly tuned to my heart and noticing every bump and blip! I've come off the warfarin and just taking 1.25mg of bisoprolol daily.

    My resting heart rate is still a bit higher than it was before but my Dr said it's nothing to worry about (It's gone from 55-60bpm to 70-75bpm). He said it may drop back over the course of the year.

    I'm starting to feel like I'm getting my life back on track, so fingers crossed it had done the trick!

    Hopefully things will settle down for you to, one month after mine I was starting to wish I hadn't had it done. Now I certainly don't think that!

    Take care and good luck with your recovery.

  • Now, being one month past ablation, I am still taking Flecainide which masks any symptoms. Not sure when the EP will want to stop the drug to find out how I'm "really" doing.

    Glad that after the passing of time, your results seem to be pretty good. I need to be patient; it might all work out for the better, as in your case. (I, too, am "tuned into" my heart; seem to notice everything.)

  • Bingo, I had my first Ablation 2 days ago and I am getting similar symptoms. Nobody garanteed me that Ablation was going to cure my AF but I had to give it a go. There is a window of 3 months when it can settle or can continue as it is, so I suggest you wait but it can be frustrating..

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