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permanent A/F

Junoesque profile image
24 Replies

what medication do people with permanent AF have?

My A/Fib is triggered by the vagal nerve. I believe that a beater blocker is no longer suited for people with permanent A/F that is triggered by the vagal nerve.

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Junoesque profile image
Junoesque
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24 Replies
BobD profile image
BobDVolunteer

Sorry you have me confused. Permanent AF is there all the time, not triggered.

As far as I know, rate control is normal with permanent AF to prevent the atrium from becoming enlarged and that can be either beta blockers or if those are not appropriate calcium channel blockers such as diltiezem may be used.

Junoesque profile image
Junoesque in reply to BobD

Sorry realised after I asked the question and posted it that it wasn’t clear. I have had PAF for 24 years and it is now becoming every other day. I realise I am going into permanent A/F. I am on Nebivolol 5mg once a day and have tried all other beta blockers but could tolerate Nebivolol . I have read on this forum that if your A/F is vagal triggered then a beta blocker doesn’t suit. Also, if one realises that the A/F is becoming permanent should one go to see an EP.

BobD profile image
BobDVolunteer in reply to Junoesque

Nebivolol is avery cardiac specific beta blocker so doessn't usually fallin to the usual problems.

To be frank if you have waited 24 years you may well have missed the EP boat by now as ablation is always best done early before the AF progresses too far. A private appointment might be the best way forward to avoid any more delays.

Junoesque profile image
Junoesque in reply to BobD

Yes realise this with EP. Can Diltiezem be taken if one has Angina too?

Buffafly profile image
Buffafly in reply to Junoesque

Yes, good for angina, it’s what I take.

frazeej profile image
frazeej in reply to BobD

I have been concerned with the suspect/alleged selectivity between beta-1 (cardiac) and beta-2 (airway) receptors of most/all beta blockers, and suspect that this lack of selectivity causes many of the complaints of fatigue upon even light exertion-especially at higher doses. Nebivolol seems to have a rather unique profile among beta blockers, and might ameliorate some of the undesirable side effects of the more standard beta blockers! Have to chat with my cardio guy (who already thinks I'm a pain in the ass!) about this. Thanks for the "tip"! Good article follows:

ncbi.nlm.nih.gov/pmc/articl...

Junoesque profile image
Junoesque in reply to frazeej

Thank you for the information on Nebivolol. Very long and interesting read. I must admit I didn’t understand it all but it did seem to me that it is used mainly for BP and Angina or Heart Failure, Atrial Fribullation wasn’t mentioned. I am on 5mg a day but I am wondering if I need to be taking it as it doesn’t seem to help much with the AF episodes. Maybe I will experiment by leaving it off for a month and see if my A/Fib gets worse. Must think about that one.

frazeej profile image
frazeej in reply to Junoesque

As I understand it, a beta blocker will not do anything for the actual afib situation, but with the rate control effect it can attenuate the symptoms of afib by attempting to keep one below all those horrendous HR's of 130, 140 and higher, which understandably freaks us out! In theory the beta blocker would not do anything to stabilize the rhythm of the heart, that would be for a drug such as Flecainide, and others. I was pretty much addressing the side effect issue with most beta blockers, mainly the fatigue upon even light exertion. As a NON-MEDICAL person (but one schooled in pharmacology), I would be very hesitant about suddenly stopping the beta blocker that I am on currently-I would be afraid that any afib episodes would become MUCH more symptomatic when accompanied by a HR >140bpm!

Junoesque profile image
Junoesque in reply to frazeej

Thank you.

Teresa156 profile image
Teresa156

Hi Junoesque,

Forgive me if I have misunderstood, but if you say that your AF is triggered by the vagal nerve, it is suggesting that you are not in permanent Afib? It suggests you have episodes that come and go and are ‘triggered’?

Please are you able to elaborate?

I take a very low dose of Bisoprolol which has controlled my paroxysmal Afib since last year and my Afib is definitely vagal. I too have heard that beta blockers might not be suitable for vagal Afib, but currently, for me they are, so it can’t always be the case.

Junoesque profile image
Junoesque

Thank you for that. Yes sorry I didn’t make myself clear. One doesn’t know what to do for the best really.

Teresa156 profile image
Teresa156 in reply to Junoesque

Hi Junoesque,

I read your response to Bob and now understand it’s not quite permanent. As I said, my Afib is absolutely vagal and I was getting it every 3 weeks last Summer and it was becoming more frequent. I haven’t had an episode now since Nov 21, since being on a low dose of Bisoprolol, so a beta blocker seems to work for me currently, so it cannot always be correct that beta blockers aren’t suitable for vagal Afib.

Seeing an EP, as others suggest is the best way forward and if you are in the UK and can stretch to it, your best bet is to see one privately as it will be quicker. It usually costs around £200 and if they do think you are suitable for an ablation can put you forward under the NHS.

Do a Google search for Electrophysiologists in your area - they usually have secretaries you can email or call.

mjames1 profile image
mjames1

Thanks for the clarification that you have had afib for 24 years and now your afib frequency has increased to every other day. Can I ask how long was the longest you've been in afib without going back into NSR? If it's under seven days, then you have PAF. If its over seven days then you have what is termed "persistent" afib. If the longest was say six months, you may have what is termed "long term" persistent. "Permanent" afib is usually when you have been in afib over a year and both you and your ep have decided not to try to treat the rhythm any more.

As to medications, a daily anti-arrhythmic like Flecainde might work well, with your every other day episodes. That's what I did when my episodes became every other day and I haven't had an episode in months.

As to ablations, if you have PAF or even persistent afib, your odds of a successful ablation are very good, in the 80% range at least according to the ep's I've spoken to in the US. And my history is borderline PAF/Persistent, having afib for 35 years and ending up with episodes every other day, just like you.

In other words, the odds of a successful ablation are much more to do with which category afib you have as opposed to how long you have had it. And unless you are either long term persistent or permanent, the odds are in your favor.

Jim

Junoesque profile image
Junoesque in reply to mjames1

Thank you for your reply Jim. Yes I think I still have PAF but because of the frequency of the AF episodes now I was thinking I am going into permanent AF. But my episodes last about 10-24 hours. The longest I think is 24 hours. I am seriously symptomatic with chest and neck pains giddiness and lose of balance when in AF. When it all goes back to normal it is like heaven. When I first had my episode I went into hospital but the cardiologist told me we don’t treat this sort of thing and sent me home. I was mortified. My episodes were about two to three months apart then. I was terrified of them. I went several times to A&E back then and was put on Solatol , then onto Bisoprolol which worked for a while. But I think the body gets used to it and it loses its effect. I have never been offered an ablation in all these years. I don’t think anyone cared about me and how awful the suffering is.I have lived with it now and so I must carry on.

As for flecainde I cannot have this as I am now also diagnosed with Angina.

Thanks again Jim.

Thomas45 profile image
Thomas45

I have permanent AF and take only an AntiCoagulant. In my AF journey I went from almost daily AF to a long period of a couple of ten minute episodes a year, for 12 years before I was found to be in Persistent AF. For the last 10 of those 12 years I took Flecainide only.

Junoesque profile image
Junoesque in reply to Thomas45

Thank you Thomas45 that is very helpful.

Ppiman profile image
Ppiman

I used to wonder whether I had vagally mediated AF but my cardiologist assured me otherwise, telling me it was unusual and mostly seen in younger people as 'lone AF'. I gather with VM-AF the heart rate is usually lower, so a beta-blocker isn't as useful. I suspect your GP will be your best guide.

My elderly friend has persistent AF but has no treatment for the AF itself, only warfarin to prevent AF-induced stroke.

Steve

Junoesque profile image
Junoesque in reply to Ppiman

Thank you that’s very helpful. My AF is triggered by a meal. After eating about 1-2 hours later AF can start. It’s no good going to GP regards AF as in my experience they know very little about it. I’ve been down most avenues regards medial help, and it is trial and error. The medical profession don’t acknowledge Vagal AF, because it is not proved.

Ppiman profile image
Ppiman in reply to Junoesque

I am lucky in having an excellent GP, and the cardiologist I saw certainly acknowledged V-AF and, indeed, was most interested in it but told me it occurs in far fewer people than the anecdotal stories on the internet imply. He told me that AF following a meal is quite common and was likely to be physically induced by intestinal activity pushing the stomach against the diaphragm and heart which can set off ectopic beats, and those can trigger AF, much as bending and stretching can, apparently, do.

I have always felt, though, that there wasn't much interest in the cause of the arrhythmias I have, only in treating them.

Steve

Junoesque profile image
Junoesque in reply to Ppiman

Well that is most helpful, it makes sense. I try smaller meals which helps a bit. But the explanation of the food pushing against the diaphragm causing ectopic beats triggering AF yes that’s very helpful. Thank you.

Jpot34 profile image
Jpot34

Flecainide and The Wolf Mini-maze. WMM if you can afford it!

JudyMarieC profile image
JudyMarieC

My afib became permanent in March, 2021. I'm currently on digoxin, Xarelto and metoprolol. My rate is well controlled but the afib, of course, is always present. I don't know if it was ever triggered by the vagal nerve.

BobbyGee profile image
BobbyGee

Just to contribute to the conversation: I have had permanent AF for at least two years. Nothing has been done for me (no appointment for a cardiologist, no ECGs) apart from my GP prescribing a betablocker (Bisoprolol, 5mg), Amlodipine and the usual anti-coagulant. I have become used to feeling light-headed at times but no longer suffer from sudden palpitations. Keeping (or becoming!) slim might help with vagus nerve pressure and better health in general. Best wishes.

Junoesque profile image
Junoesque in reply to BobbyGee

Thank you. Looks like we are on our own with this. I find the beta blockers don’t make any difference. I do take anticoagulant for preventative stroke.

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