Permanent AF

i haven't been on the forum in a few months as I have been back to full time work. Unfortunately I am no better at all after my ablation last Oct, with daily AF episodes lasting 5-6 hours at a time. I recently almost collapsed in work and was taken to hospital. It was detected that the anti-arrythmic drug I was on (Disopyramide) was at toxic levels in my body, causing a prolonged QTc and the EP said I could have had a cardiac arrest. So I am now off all anti arrythmics as they all carry that risk for me as I need very high doses for any kind of symptom relief. I feel now worse off them though which is good. My EP has predicted i will go into permanent AF and he said people find this easier yommto tolerate than PAF. I find this difficult to believe as I absolutely hate the feeling and discomfort of AF. Has anyone any views or advice on this? I cannot have another ablation as I have multiple arrythmias and he said it is like finding a needle in a haystack. i am thankful for otherwise wonderful health but he said my heart is very chaotic and an abaltion is very difficult to carry out on me having done an EP study and previous ablation. .

20 Replies

  • sorry to hear this.

    Suggest you have a concerted go at lifestyle changes unless you've already done so- weight loss, no processed foods or alcohol or caffeine, foods high in potassium and possibly a magnesium supplement ( check with doctor first)

    There's nothing to lose and haviing food high in potassium has made a great difference to me - not managing the weight loss very well though!!

  • Thank you for your reply Rosie and the suggestions. I have tried every lifestyle change imaginable, including sleeping seated upright for 2 months to try and ward off the onset of my nocturnal AF. Unfortunately, nothing has made a difference for me but I shall certainly keep on trying to live a healthy lifestyle as I have 2 young children and it is good for overall well-being to live healthily.

  • I think Rosy's post is great and I'd do the same, i.e. just do everything and see if you can just alleviate the symptoms. Hope you get a result.

    I'm on Disopyramide as well, and it's working very well on me, 100% in fact, which in a way makes me a bit wary, if that makes sense. Can I ask what dose you were on. I'm on 500mgs a day with permission to go to 750 when/if I want to.


  • Hi Koll. I was also on 500mg a day. Maybe i was just unlucky. the ECG i had 3 mmonths ago was normal so it is unknown why i became toxic when the dose had not changed. best wishes with your continued recovery:)

  • Hi Vony

    I've only been in permanent AF for 4 days but actually currently finding it easier than PAF which is a big surprise to me !I no longer have the worry of will I be ok today and find I have quickly got used to the constant feeling and as long as I keep my mind occupied and slow down a bit (I'm a busy sort of person) can ignore it

  • That is so interesting to hear and also reassuring as I was horrified when he said i may go into permanent. I hope you continue to feel ok and thank you for taking the time to reply:)

  • Thank you so much Jo. I feel in a good place emotionally which is the most important thing to me as I have been so severely worried for 2 years that it is good to feel well despite the AF. I am really enjoying work and make the most of my time in NSR with my children and husband which i am grateful for. How are you Jo? And thanks for the lovely message and thoughts. X

  • Hi VONY. You`re not alone. I also suffer from multi arrhythmias I have let AF take over and am now in permanent AF (about 7 months so far). It can take a while to settle down, but once it has, I find the symptoms are barely noticeable. With a good rate control drug (mine`s bisoprolol which keeps my resting rate down to 60bpm), lifestyle can be pretty near normal, with a little care. Being in AF, I don`t get any of my other arrhythmias, which used to drive me mad. If all else fails, there`s always pace and ablate. You`ll need a pacemaker, of course, but you should have no other symptoms.

    Good luck.

  • hi Wilen. That is really interesting to hear that you barely notice the AF now. My EP is certain permanent AF is easier to live with than PAF. It is also interesting to know that the other arrythmias no longer bother you. It is definitely reassuring to hear life gets easier rather than worse once in permanent AF. Though it has been 3 weeks since my EP said this and he predicted I would be in permanent AF within a month yet I am still the same....episodes limited mostly to evening and night time when i sit or lie down!!!! Sooo weird!

  • Hi. I am now in permanent AF. My life is so much easier than when I had PAF. I don't have those horrendous rapid attacks that ended up with me in A and E.

    I am on Digoxin and Rivaroxaban.

    I have my fingers crossed that it will continue like this.

    Lots of good luck. Bebe.

  • That is great to hear such a positive post Bebe and also reassuring that you find it easier. I do keep hoping i will never go into permanent AF but hearing you say it is easier than PAF makes me wonder. Best wishes:)

  • I have been in permanent AF for many years now and just live with it. I have to slow down but otherwise don't notice the symptoms very much. From reading the blogs in this forum I am pretty sure permanent has less symptoms overall than the off on variety.

  • Hi DerrylynnE..were you ever in paroxysmal AF? Did you first notice being in AF? I am always fascinated when i hear of people finding out 'by coincidence' that they are in AF as i cannot escape the feeling! Thanks for the info:)

  • i had a few strange feelings in my chest that led to an ecg. And found I was in AF. I don't know why I don't know I am in AF as most the time don't seem to notice anything. Although it could be I have been in it so long my brain is turned off to it. When I was younger my heart seemed to miss a beat and kick back in with a thump. But don't get that anymore. Don't know if it is connected. It seems not a lot I can do but live with it. So just take diltazium to keep my heart rate down.

  • I have been told I am permanent AF now. It has only been Ablations and CV's that have put me into PAF at best. The best they can do now seems is get my heart rate down to healthier levels. I have been told that the Pace and Ablate that was cancelled is now going to re looked at?

    I was diagnosed in 1992 and have multiple conditions which do not help. I have had this so long now I do not even realise I am in AF sometimes.

    Be Well

  • I'm in permanent AF

    No drugs

    Feel ok 90% of the time HR 90 ish

    Still got swoolen legs now an then

    Need to drop a few pounds working on that one

    I guess at some point drugs will play a part again

  • Hi

    I've now been in permanent AF for over 2 years and have had lengthy periods also in the past when waiting for cardioversions. Whist it's not as confortable as being in NSR, as I am occasionally aware of the AF and have tines when it's more pronounced than "normal", I find I can cope with it. It doesn't stop me doing anything I want to do (moderate exercise, golf) but I do have to accept that somethings make me more breathless than when in NSR (climbing hills or stairs).

    I've been told that being in permanent AF doesn't affect life expectancy (or rather that there's no evidence to say it does!).

    As other posts have said, it's a matter of finding what your limitations are and modifying your lifestyle to live within those limitations.


  • Hi Lance. Thank you for the reply and the info. I find AF a most unpleasant and challenging sensation but maybe that is because my heart is going fast. Even when in AF and not too fast though, I am still very uncomfortable and feel it in my back and the feeling of hollowness in my chest. are these sensations less intense when in permanent AF? You sound like life is still enjoyable which is reassuring as I find less enjoyment in the evenings when i go into AF and i certainly cannot socialise even though i try to maintain a positive and accepting attitude. Sorry for all the questions!

  • AF affects us all differently, so your experience is likely to be different to mine. I don't generally have sensations that are painful, but I do get tines when my heart seems to 'buzz' - sonetimes when I wake in the night and this is uncomfortable but doesn't prevent me getting back to sleep. Generally I don't get any sensations during the day, just occasional breathlessness. I think things got better over time as I got used to being in permanent AF.

    My cadiologist at Harefield said that exercising within my capabilities would help and this has certainly helped. My original diagnosis was dilated cardiomyopathy + AF and over time, though I still have AF my heart has more or less returned to normal size.

    Hope things improve for you


  • Hi Lance

    I have been diagnosed with AF and dilated left ventricle (cardiomyopathy) 6 weeks ago. All discovered as a result of a nasty wasp sting to the tip of my tongue, a visit to A & E and an overnight stay and a subsequent echocardiogram. Consultant reckons that after discussing things with me that I may have developed AF about 18 months to 2 years ago. But apart from 2 things which happened while on my bike 5 years and 4 years ago, (extreme breathlessness but didn't pass out), I have no symptoms apart from the odd palpitation. I cycle a lot and am 56 years old and have read that over exercising in middle age can be a cause. Am currently on waiting list for cardioversion. Considering riding my bike for first time in 6 weeks today but worried about this! Consultant has told me to carry on riding but don't "strain" uphill like I did tend to do in the past. However it's reassuring to know that you and others in permanent AF can lead a normal life. I suspect I will be in permanent AF as I have also read that the chances of a successful and permanent change to NSR as a result of the cardioversion maybe slim as I may have had undetected AF for a couple of years. Not sure if others have any views on this? Anyway I'm on bisoprol (7.7mg daily and Rivaroxaban 20 mg daily) and I feel great. Have Cut out alcohol and caffeinated coffee and now following a healthy diet and have lost weight despite no exercise recently. It's great and reassuring to hear of you and others who live successfully it seems with permanent AF. Good luck to all!

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