Moving into permanent Afib?

[Roobydooby]

Hi everyone, I read this forum regularly & over the last 3 years have received some very helpful advice from you lovely knowledgeable people. I don’t often comment as I don’t feel I’d have anything useful to contribute, of course if everyone thought like that there’d be no forum, so thank you!!!

Ok, I’ve had paroxysmal Afib for 3 years, I take Flecainide 2 x 100 per day with an extra 100 if needed, (which is very rarely,), plus take Rivaroxaban this has worked really well so I’ve not had any major problems. Last week however the Afib kicked in with a vengeance & didn’t really go away, honestly felt as if I was dying! It came to a head on Saturday night when I decided enough was enough & called for an ambulance, it came within 10 minutes. I won’t bore you with details of my 10 hour wait in A&E before blood tests showed low potassium & magnesium, was then taken to a much calmer ward where I was given an infusion then 8 hours later was sent home with those horrible Sando-K supplements. Have a follow up blood test on Thursday to check the levels are going in the right direction.

I had a good sleep last night but woke up this morning back in Afib, it’s deja vu!

I wanted to ask those of you with permanent Afib if this is how it was for you, weeks & months of nothing, then full on 24/7? If it is becoming permanent I don’t know how I’ll cope, I feel so awful & my anxiety levels are through the roof, which I know is counterproductive, but I’m totally trapped in worst case scenario mode.

I’m still officially an outpatient with the local cardiology team, so I’m thinking of asking my GP for another referral, do you think this is a good idea, don’t know what they can do but I feel I need some specialist reassurance!

Sorry for the long moan & thanks for reading!

Jen

[10gingercats]

I believe permanent Afib is different for everyone.Some do not feel it at all but with a stethascope a doc. can hear it or it can be detected on an ecg.For years i could not feel mine. then two years ago it hit badly and frequently for a few months. Some people have additional heart problems and i guess this may feed into how it affects you,and/or life style. i am not a doc so. cannot tell you definitively.I can only tell you how it affects me. other will tel lof their experiences .

[Roobydooby in reply to 10gingercats]

Thanks for your reply, can I ask how you coped when it hit badly & frequently?

[BobD Volunteer]

As I explained earlier today in another post, permanant AF is only an agreement between patient and doctors that NSR will not be chased and that rate control is the way forward. You are a long way from that yet.

You need to contact your cardiology department or preferably ask to see an electrophysiologist ( a specialist in arrhythmias) and have a serious discussion about your treatment. A cardioversion (DCCV) should be tried first to see if NSR can be attained which can sign post all sorts of future treatment options.

[Roobydooby]

Thanks for your reply Bob, I was discharged by my electrophysiologist when he was happy that the flecanide was effective, since then I’ve had one follow up with a cardiologist. I still have the secretary’s number though so will see if I can refer myself or if I have to go through the GP

[dedeottie]

after a long A fib journey spanning probably 15 years, attempts at ablation, control using various anti arrhythmic tablets etc etc my AF finally became persistent in April this year. It was peppered with episodes of tachychardia, all at around 130 bpm.

I have always been symptomatic and had been dreading being in it 24/7 but strangely, it was not as unbearable as I had been expecting. I feel as if my brain had convinced itself that an irregular 130 bpm was just fine 😬

After a lot of drama ( well documented in my previous posts) I was offered a cryoablation to isolate pulmonary veins followed by RF ablation to deal with other rogue area in the atrium. I went ahead although my expectations of success were extremely low as my AF was no longer paroxysmal but to date at one month post ablation I have had no AF and No tachychardia. 🤞 I mention this to give you hope that there is still something that can be done to help. You need to get back with your EP though. Would an initial private consultation help?

Good luck

[Roobydooby]

Thanks for your reply, I’m pleased to hear your procedures have been successful & hope they continue to be so. I have seen my EP once before on a private basis & am going to contact his secretary to arrange another meeting.

Best wishes

[carolly]

Absolutely agree you need an EP and a medicine strategy to knock back those annoying episodes of AF. My last one lasted 7 weeks and after persistence and a fair bit of extra Flecainide and Bisoprolol, I’m back in a nice steady (slow) rhythm. No point giving doses as everyone is different. Don’t give up! Best wishes.

[Roobydooby in reply to carolly]

Thanks carolly, pleased to hear you’ve come through it, that gives me hope!

[barge5]

hi. I took flecanide, stopped my Af but made me come out in terrible skin rashes. I stopped it as it was only temporary. I had an ablation but it hasn't worked, I now have a loop recorder in my chest. Its captured 2 episodes of AF in two weeks now lasting 3hrs a pop. I waiting togo back to hospital now to see about another possible anlayion!

[Roobydooby in reply to barge5]

Hi barge5, I had a loop recorder in for 3 years, was removed last year, it captured AF episodes so I was prescribed flecanide. Fortunately I haven’t had any side effects! Sorry to hear the ablation didn’t work, hope the next one is successful

[barge5]

ablation I meant sorry

[barge5]

also six weeks ago my father went into permanent AF. Now has a pacemaker fitted and doing great. Not skipping a beat!

[Roobydooby in reply to barge5]

that’s great news for your father!

[OldScout]

Hi

You have my sympathies. I took Flecainide and Riveroxiban, same dosages as you for paroxysmal AF. Lost 3 stone, symptoms went away, so reduced the drugs to nil, carrying the Flecainide as a pill in the pocket.

It worked fine for a year, then symptoms returned. Started the drugs again (this time Flecainide and a B blocker), but in July ‘21 had a TIA. Hospitalised and scanned really quickly, scan showed no damage.

Back on the Flecainide and Riveroxiban for 28 days, then had an ablation privately.

Best thing I ever did. Weaned off Flecainide in 3 months, I take the Riveroxiban because of the history of TIA.

But . . . and this is the crunch bit . . . no AF since. None. As if I never had it. My recommendation is to speak with your GP/medic and explore what her it’s appropriate for you to have an ablation. I haven’t looked back, and my consultant says it appears to be 100% successful.

[Roobydooby in reply to OldScout]

It’s so good to read about a positive outcome, I’m so pleased for you. I’m trying to get in to see my cardiologist & have a review of meds, treatment etc

[mopaty]

I'm suprised they haven't suggested a Pacemaker/Defib. since you keep going into Afib..

[Roobydooby in reply to mopaty]

No mention of anything at all!