I am back in persistent AF, 2 years post successful ablation. Cardioversion worked for 4 days. Started 50mg Flecainide BD yesterday. Higher from next week.
They're saying another Cardioversion in Nov, so guess they're not expecting the Flecainide to put me back in NSR.
Has anyone else had this treatment like this and it worked ?
Temporary basis I guess while waiting for 2nd ablation.
What were you doing when your heart went back into AF after your cardioversion? I've had several and also take Flecainide, it's been a wonder pill for me.
Jean
I was in bed this time Jean. Mine has gone back to persistent. Was yours persistent or paroxysmal. And at what dose do you think I should expect to see a shift ? It's doing nothing as yet! If anything HR is a bit worse.
Did it wake you up?
I'm in constant AF, but it's usually only flitting between 60 and late 90's. I had so many cardioversions that they eventually said I'd had enough and they would offer no more. I would have liked to go on having them. Exerting myself would often put me back in AF, but them sometimes when in AF and exerting myself it would put my heart back in sinus rhythm. So I think it's true what's sometimes said and that is what can set off AF can also put you back in normal rhythm. My normal pulse rate is 62ish, right now it's 74 which is no big deal. It will be interesting to see how you get on with the bigger dose of Flecainide. Hope it works for you.
That’s very true Jean. Years ago I bought one of those mini exercise trampolines and about the second go I went into AF. Weeks later I woke in the night with AF, saw the trampoline in the corner and thought why not, worth a try. Not sure cardiologist would prescribe 6 bounces on a trampoline at 2am as a remedy but it worked for me. x
That's interesting to hear your trampoline put you back in rhythm. Did you ever try it again? I bought one of those mini trampolines too, but it was years ago and I just used it a few times. Ever since it's been one of the many items cluttering my garage.
No, once I knew it could trigger an episode and even though it put me back into SR it went to the charity shop. I love trampolining too even at my age. In my village there is a drumming group and can’t go near them either as the vibrations cause problems. Never gone into AF but heart certainly doesn’t like it. They took part in a street festival yesterday and I had to stand at least 25yards away. Best not mention potholes and sleeping policemen either 🤫. x
I have found some vigourous housework has put me back into NSR but my episodes always start when relaxing or sometimes when asleep.
Yes thanks Jean. I think the AF di wake me up. I wear a Garmin watch and I somehow knew to go straight to check my results on my phone. It also felt a bit quivery about an hour before it kicked out.
For me, I think whenever I have gone out it has been around a major stress. (Acrimonious family after my Mum died). This thankfully has now ended so only the Persistent AF again as my big stress.
After my first ablation, within 2 years I only had 2 major AF episodes. Then this last one that has stayed Persistent, bar 4 days back in NSR, post cardioversion.
Though my AF doesn't go too high either (on 10mg bisoprolol), it still means I can't do any proper exercise on this dose.
I just want to be back in NSR, and hope my consultant will put me back on the ablation list for Ablation No 2.
Thanks Jean, I do want to be back to NSR. Are you considering an ablation or not wanting to go there?
Think it did wake me up. Felt a few odd twinges before I went to sleep. Then 2 hrs later, definitely out. So on 10mg betablockers I am between 70 and 90 bpm with light activity.
My normal pulse is around 55
Do you feel ok taking the beta blockers?
I've had 3 ablations and been told I'm not suitable for any more. My EP said some people are just not helped by having them and I'm one of them. Though I think my third one did help reduce my fast rate.
Did the ablations put you back in NSR, even for just a few months ?
Afraid not. I think the first two made my AF worse. After the third and last ablation, in July 2016, my heart raced before I could leave the hospital and I was kept in for another day and put back on my medication. I have to say when it went back to normal rhythm I felt great, but then I had to be cardioverted a few months later. From then I went in and out of rhythm many times and would end up being cardioverted.
Now I'm in constant AF and to be honest I can cope with that better than PAF, lead a fairly normal life and can walk the hilly coastline where I live. I've also learnt never to eat a large meal before a walk. In fact most of my meals are small now and I'm more of a grazer. I try to eat natural food without additives and feel that has really helped.
Jean
I’ve had 2 ablations and gone back into persistent twice since. I was told that when that happens I take 300mg flecanide (pill in the pocket) as soon as possible and so far it’s put me back in rhythm each time. Was that not an option?
I am hoping this will be the plan Ross, will ask the arrhythmia nurse again this week. Though for now they are going for a slow build up on the Flecainide. Hence am only on 50mg BD right now.
Still a bit unclear as to how come another chemical cardioversion plus the Flecainide to help keep me there, post op. I did find a paper online on it last night though that said this can sometimes be a good approach.
Right now on the 50mg, seeing no change and a slightly higher HR
I’ve not had an ablation but I was prescribed 50mg flecainide twice a day pre my cardioversion to see if it would put me back in NSR. It didn’t on its’ own but with a cardioversion August 2020 it did work (2 shocks needed). I’ve remained on flecainide since then and had no recurrence of AF. Good luck - I hope your treatment goes well.
Ah that's brilliant to hear Daisy. Are you also on a betablocker, if so be interested to know what dose of that is maintaining you. Were you also persistent before the cardioversion? And how do you feel now in yourself in terms of quality of life ? Are you still restricted exercise wise in any ways ?
Hi Turquoise19 - I was in persistent AF before my cardioversion and have been on a stable dose of 50mg twice a day of flecainide to maintain NSR. I was on a beta blocker (bisoprolol 10mg) but after my cardioversion it made my heart rate so low that my cardiologist recommended I stop taking it (tried reducing it first but no use). I’ve not been on a beta blocker since September 2020. The best thing for me is my quality of life. I am very active and I now have no restrictions on the exercise I can do. When I had AF and was on the beta blockers I was very limited in terms of what I could do. Hope this helps.
Yes very helpful to hear Daisy. Just what I am wanting to sort it for me. I am usually v active too, cycling n running, all at a total stop right now.
What would you say might be the main causes or triggers of the AF for you, if I can ask that ?
Hi Turquoise19 - my persistent AF started without warning over night April 2020 and they’ve never been able to identify the cause. I’ve just tried to minimise all risk factors so have cut out caffeine, drink alcohol only within recommended limits, reduced my weight, eat healthily and stay hydrated. I’ve always exercised a lot. I’ve had high blood pressure and an underactive thyroid for over 10 years but both are controlled with medication. So it’s a mystery but I’m just hoping the AF stays away!
Thx Daisy, yes same here, my BP was high when I got the AF and high stress. Thankfully the BP is better managed now. I also exercise a lot(when not in AF). Done some long distance cycling, but I still think the stress has been highest factor. Acrimonious family, after my dad died and now my Mum. Though this part at least is now resolving.
Just hanging my hopes on the Flecainide and cardioversion now !!
I went back into persistent AF after 6 years . Cardioversion booked and started 100g Flecainide twice daily - 4 weeks later heart converted. Cardioversion cancelled , staying on Flecainide and still in sinus rhythm 6 months later .Hope it works for you too.
Woh that's good to hear Cricket. And it took 4 weeks, guess that does tell me I have to be a bit more patient!
Can I ask you how you feel on that now re quality of life, exercise and if you are on betablockers now, what dose ?
I feel absolutely fine , I play golf and exercise normally . I also take 2.5mg of bisopheral beta blocker and have done since original diagnosis. Apixiban as well . My heart does not race but is irregular when in AF. Hope that helps
Yes me too, I don't get the dangerous racing. Just a few spikes . Now back in persistent. I have 2 enlarged atria, which may be a factor for more episodes I think, otherwise Echo cardiogram showed fairly ok condition. Any idea what might be triggers for you ?
No , think it is genetic as my Dad had it too. I have no symptoms and do not constantly check my pulse as have eptopic beats as well . I have been diagnosed as in AF when going to GP for other reasons . Echo and MRI were both Ok . My choice to take meds to keep in rhythm as I get older (63 now) and feel happier knowing my heart is beating nicely !
Yes my dad had AF I finally learnt after he died. Though not till he was 78. I got it at 53.
Interesting - I only remember my Dad saying he was told he had an irregular pulse when he was called up to Army. I think he just lived with it and it was not an issue for him . Do you have any symptoms with yours ?
Yes it really gets in the way of me being able to exercise how I'd like. How about you ? I just want to be back to normal!
My son is now experiencing an episode of AF about every 6 months. He has been put on 2x50 Flecainide plus Bisoprolol. He has had several cardio versions which always seem to work at the time. No one has mentioned ablation as yet.
How old is your son Hylda, if you don't mind my asking. Are they thinking of increasing his Flecainide ?
He’s 51 and fingers crossed seems stable at the moment
Yes that's good to hear.
Just to add to the experience of others - I was in persistent AF for eight months this year. Flecainide did not work for me. Cardioversion did and am now following recommendation to continue with Flecainide (110 g) twice a day. Up to now I've have been in sinus for about a month and have a review in December. I wish you the best going forward.
Thanks Sambiqui, so that's also a good recommendation as it sounds like the Flecainide is maintaining you now.Do you have any idea of what may be an underlying cause/trigger for your AF. And how do you find your quality of life now on the meds you are on ?
Any restrictions?
My goodness those are difficult questions to answer. I often feel I'm floundering and just 'keep taking the tablets' because I don't know what else to do. I have to trust that it is the Flecainide that is maintaining me in sinus but there's no way I can know that for certain. Nor can I tell if it's the drug that is making me tired and emotionally flat or if it's something else all together. I think this is a problem for many AF sufferers. Some people seem to take medication and clearly know it is not for them. Or that it's just right for them. I'm not one of those people. I've only been back in rhythm for a month so maybe I'll need more time to assess things. I've a meeting with a consultant just before Christmas, after an echocardiogram that i thought would make more sense to have before the cardioversion but was told otherwise. As to triggers, I was told at a hospital four years ago that I was in AF, though without symptoms. I returned to sinus fairly quickly. Since then I had not been aware of being in AF until February this year when I felt something was going on in the chest area the day after the first covid jab. Three days later I went to A & E and they confirmed I was in AF. I had been in it ever since until the cardioversion a month ago. So, I've really no idea where things might go from here. I had stopped alcohol (I never did drink much) and now have decaff coffee but whether they were ever triggers is unknown. I shall have think hard about whether to have the covid booster. Hope I've not written too much. All the best with your own journey.
Thanks Sambaqui, very good to hear your thoughts. For me I think it has been intense stress over the past few months. Big family saga, thankfully now resolving .
So just need my heart to do the same. I would like to get back to my normal exercise routine. Been v housebound since this kicked off 7 weeks ago now!
Am I really an 'enigma'?
What next, if anything?
Flecainide failed after 8 months
