Permanent AF

[lindyloo59]

Is anyone in permanent AF and have steady heart rate controlled by drugs? Thanks

[BobD Volunteer]

The fact that one has AF ensures that heart rate is chaotic . Yes the vetricular rate can be well controlled but it would not be regular.

[jeanjeannie50]

I'm in permanent AF and my pulse rate goes between 60's and 90bpm at rest. I take 100mg Flecainide twice daily along with 12.5mg of Metoprolol. In the days of normal rhythm I was 62bpm to be honest I rarely check what it's doing these days. I've had three ablations and numerous cardioversions. Have now been told that I wont be offered any more of either.

Jean

[lindyloo59 in reply to jeanjeannie50]

Thanks for that much appreciated 😄

[Scottie3 in reply to lindyloo59]

I have been in permanent Afib for 5yrs don’t even feel the pounding that I used to feel take Apaxaban and beta blockers.

[lindyloo59 in reply to Scottie3]

Thanks 😄

[oscarfox49 in reply to Scottie3]

Which beta blocker do you take and does it work for you?

[Scottie3 in reply to oscarfox49]

I. Take bisopriol 3.75

[Eliktrick in reply to jeanjeannie50]

Have you read The Afib Cure? So many things you can do!! Where are you? Have you seen an EP?

[jeanjeannie50 in reply to Eliktrick]

I don't think you intended the above message for me, as I said in my reply I've had 3 ablations by an E P and numerous cardioversions.

Jean

[Eliktrick in reply to jeanjeannie50]

Ok my apologies

[mjames1 in reply to jeanjeannie50]

Hi Jean,

How long have you been in permanent afib and when did you start flecainide?

I ask because flecainide is not a rate control drug. I t's an antiarrhythmic that controls heart rhythm. For that reason it is given either on a daily basis for people not in afib to keep you out of afib, or on a pill-in-pocket basis to help you convert quickly from an afib episode back to normal rhythm. I have never heard it being used for someone in permanent afib. But I'm still learning so maybe there's something I'm missing.

Jim

[jeanjeannie50 in reply to mjames1]

Hi Jim, with 2 x 100mg Flecainide alongside 2 x 12.5 Metoprolol pills daily, my heart rate stays below 90bpm. If I stop my medication it shoots up high and believe me I've tried many times over my 17 years of having AF.

Until about 2.5 years ago I would have attacks of paroxysmal atrial fibrillation/tachycardia/flutter, which had me admitted to a hospital ward many times. I feel better than I have for years with my heart rate as it is now.

Jean

[mjames1 in reply to jeanjeannie50]

Hi Jean,

I understand you want to keep your heart rate low in permanent afib. And you should want to keep it low.

My point is that Flecanide is not the right drug for that. Flecanide is a drug used to control rhythm, not rate.

I'm not a doctor, but I assume it is the 2/12.5mg of daily metoprolol that is controlling your rate, not the flecainide. And even if the flecainide had some small effect on your exercise heart rate, there are safer drugs that would do the same. I take flecainide for rhythm control and that drug carries some risks. I would never take it for rate control alone.

Are you seeing an ep who has reviewed your meds or are you seeing a cardiologist or gp? If you're not seeing an ep, my suggestion is to get a second opinion from an ep regarding the flecainide. If you're seeing an ep, please ask them why they are prescribing flecainide for rate control when it's a rhythm control drug. And maybe you could report back because maybe there is something I'm missing.

Jim

[mjames1 in reply to jeanjeannie50]

Another thought...maybe the flecainide was prescribed to you correctly years ago when you were not in permanent afib. And then they either forgot to take you off the flecainide when you went into permanent afib or maybe a new doctor, less knowledgeable doctor, just kept you on it because it was in your chart.

[jeanjeannie50 in reply to mjames1]

I'm still in AF why would I not want/need Flecainide to help my rhythm?

[mjames1 in reply to jeanjeannie50]

Are you saying that the flecainide helps you get in normal sinus rhythm? If that's the case, I understand why you are on flecainide, but by definition that means you are not in permanent afib. Permanent afib is when your heart rhythm cannot be corrected by treatment. In any event, I wish you well.

Jim

[jeanjeannie50 in reply to mjames1]

If I don't take Flec my rhythm is worse.

[jaz03 in reply to mjames1]

Hi. I agree I've never been offered flecainide.

Metropolol is a bad one for AF. It has been banned for me. Tired, fatigue and breathless!!!! Bisoprolol is better.

It's. a trial and error lot of choices.

cheri

[oscarfox49]

I just had the fact that I am in permanent AF confirmed a week ago, though my GP had already said that this was the case. I started taking Sotalol (beta blocker) in 1995 after first real attacks of paroxysmal AF, and until an ischaemic stroke 20 months ago I was coping very well and able to do most things. Now the cardiologist says I must change to Nebilolol which is more cardiac specific, though even with Sotalol my pulse feels entirely regular and I only notice the AF when I climb a slope or do too much. But an ECG always shows it is occurring. Alcohol is entirely out now and makes AF far worse. I am hoping the transition to Nebilolol will give me more energy. Try listening to the Youtube videos by the cardiologist Dr Sanjay Gupta of York Cardiology who has lots of helpful information on various aspects of AF.

[lindyloo59 in reply to oscarfox49]

Hi thanks for reply beetn on to listen to Sanjay Gupta and he is excellent. Good luck with your AF journey 👍🏼

[oscarfox49 in reply to lindyloo59]

Very best luck and good fortune to you too. Glad Dr Gupta was helpful.

[jaz03 in reply to oscarfox49]

Hi. Just wondering if you are on PRADAXA?

I'm narrowing me down to it causing 'no energy'. The control of AF was the first step though. CCB did the trick for me.

cheri

[Thomas45]

I've had permanent AF for about six years. That was after 19+ years of paroxysmal AF. A GP who has specialist knowledge of AF, who was and maybe still is a trustee of the Atrial Fibrillation Association, told me to stop taking Flecainide as it had stopped working. For AF I only take an AntiCoagulant

I had a brief spell of a beta blocker, prescribed by s hospital doctor following rapid AF while I was under a general anaesthetic for an unrelated condition. But beta blockers gave me urticaria and exacerbated my asthma causing hospitalisation, so all beta blockers stopped.

As for the permanent AF it's still there. Sometimes I feel it's just a regular pattern of ectopics, but when I try to recognise the pattern it's not there.

However AF causes no problems. I don't feel there's a need for Apple watches or other gadgets to tell me during every minute of every day what my heart rate or BP is. Of much greater concern is my right leg foot drop which for me means reliance on public transport, and planning for journeys. I have a forthcoming ophthalmic appointment at a hospital which is 40 minutes away by car but 2hours and 20 minutes by bus. Permanent AF pales unto insignificance compared with other ailments. I am sure my heart rate fluctuates but it causes me no problems.

[Nannysue1]

Hello. I'm now in permanent AF and have been for the last 20mths. Like Jean, my resting heart rate is in between 60 to 90 most of the time. I take Apixaban and Diltiazem. I had been on Amioderone for 7 yrs and it had held my AF very well but once it stopped working, there was obviously no point in taking it. I'm really relieved to be off of the Amioderone, even with the trade off of being permanently in AF. It doesnt stop me doing much at all. I'm currently down with Covid! 😡 escaped it for 2 yrs but courtesy of one of my grandkids, I now have it. Coming out the other side of it I think, tested positive a week ago and had heavy cold symptoms which havent affected my AF. Good luck

[lindyloo59 in reply to Nannysue1]

Thank you for your reply. Hope you recover fully from covid soon. Take care

[Gafuk]

Hi , I’ve been on Riveroxyban for 5-6 years and last 8 months Bispro ( not sure on spelling and my medication is not handy) . I am lucky up to now, I don’t even know I have Afib but that could change so I don’t take it for granted. Who knows what’s the right course to take but ablation would not improve my life so why risk what I have. I have decided to take action if my circumstances change. I hope you are not in a mind troubling situation and good luck.

[jaz03]

Hi. I guess that is me.Every ECG that I have had 4 ECG last year shows that I have AF.

But control of rate most important lindyloo.. My cousin was caled LL! Lovely. Cheri

[Angusdon]

Been in Permanent AF for almost 2 years the only medication I’m taking is Edoxaban.Most of the time I am not conscious of having AF.

[etlmadd]

I’m on Edoxiban and Digoxin, I have learned to live positively with irregular heartbeat, I can’t change it, so try to not let it rule my life. Bisoprolol made me so breathless and channel blockers leg swelling which is why Digoxin. I have had 1 cardoversion, only worked for a short time, ablation never offered and now told it wouldn’t work as have had persistent AF since 2017.

[Coco51]

I had persistent AF ie 24/7 for many months before my 2 ablations and found the combination of Flecainide and Bisoprolol made the rhythm more regular and slower.

[lindyloo59]

Thank you