AF constantly

I read other post and people saying they have episode of AF that last eg: 2 days.....12 hours etc. Mine never goes away it is constantly in AF 24/7 despite taking 10mg of Bisoprolol and 125 Digoxin as well as my warfarin daily.

Does anyone else have AF like this...day in day out. I am on the waiting list for ablation although my EP isn't keen on doing it and would rather try and control with drugs and says only 50/50 chance of ablation being successful.

I do feel fed up and down at time, but I am trying to be optimistic.

42 Replies

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  • I am also in Afib all the time....halter monitor shows 99%.......I have just accepted it..Been over 10 years.......I am not out of breathe and seem ok basically so it just is what it is.....they say I am past the point of ablation. After fighting the drugs I am on Digoxin, Pradaxa 4 months now (so I don't burden others with a stroke event) and recently just 3 weeks diltiazem to slow my heart rate down as was averaging 95 and now more like 70's .....seems ok....no bad side effects. I can do anything basically and exercise heavily sometimes even. Easy to swim 50 laps. Some of the people going in and out of afib seem to be having more problems. People seem to get really nervous when they go into afib but if you are in it all the time I guess you don't notice it as much perhaps....so maybe we are the lucky ones. I have to be careful with too much chocolate and certain triggers that make it worse at night. Otherwise ok....

    Once I was in the emergency room and the nurse told me that everyone there had afib.....I have a stressful job and that may account for some of it but also meditate daily. Take Care

  • I fully agree with spiritji - I am in permanent AF and have been for nearly a year. I chose to stay in AF rather than have an ablation, as I used to get several bouts of other arrhythmias when in NSR which were very debilitating. I get virtually no symptoms when in AF. Both my cardiologist and EP have endorsed my decision, as long as the heart rate is well controlled. As well as anticoagulants, I take 2.5 mg bisoprolol daily which keeps my rate at around 60 at rest and 80 ish when more active. Your body will adapt to the new regime and you should be able to enjoy a reasonably normal lifestyle.

    There are millions like us out there. Good luck!

  • Thank you for taking the time to respond....the thing is I have a lot off trouble wit leading my normal life...I get very breathless and can't walk very far without stopping for a rest...stairs....well I avoid if possible. Just got back from GP and he has now doubled dose to 250. I am determined to get my quality of life back.

  • I wonder what your Doctor would think about diltiazem as it is a calcium channel blocker and people have said it has helped them be able to exercise again....I take it and it seems a good drug and so much better that the betablockers but I hear everyone is different

  • Thank you...I will get myself right.

  • I am normally in persistent AF. Just had 4th ablation so at the moment in SR although not feeling the benefit as I did with the others. I can hardly exercise, am breathless and worn out. I have had it for at least 6 years.

    Generally ablation are of benefit, if it has been proved by cardioversion that you can go back into SR.

  • Thank you I have had two successful cardio-versions. The first lasted six months...the second only five weeks. It was wonderful being in NSR.

  • Yes same here. Had two cardioversions but have reverted back to AF. cardiologist not that bothered and thinks I shouldn't have any more interventions which I'm not sure I agree with. He blames most of my symptoms on the beta blockers. While I hate the persistent state, I don't have the same terrible episodes which are reported on this forum. Flip side is that there's much less success rate for interventions in persistent state and therefore much less desire for NHS to perform them

  • Thank you. I am going to take the chance and go for the ablation....I have to...I want my life back. Having had two cardo-version I now know how well I felt when in NSR.

  • I understand that feeling completely. Good luck.

  • Thank you

  • I too am in persistent AF. In my case I am on no medication at all as the Beta Blockers just made me fatigued and didn't have any beneficial effect. I was on blood thinners but am now off those too. I am thinking about going back and asking for a cardioversion I think (not had any kind of intervention yet).

    From what I can see on this forum peple who get attacks of AF seem to be in more pain/discomfort/anxiety than we who have persistent AF. I could be wrong.

    Diagnosed about 4y ago, probably had it for years longer, probable cause intense cardio vascular excercise. I'm 52.

  • Hi I'm also 52 and I'm too young to give up. I've had 2 cardio-versions and felt wonderful when in NSR. You really should be having at the very least anticoagulants. Go back and see an EP. Good luck.

  • Hi, No I haven't given up either. still lots more to try. My Chads score was 0 so was advised that I didn't need anti-coags or thinners. As I still run regularly and feel OK I am looking forward to some kind of intervetion to see what it feels like to be in NSR...

  • Good luck.....heres hoping for both of us.

  • Why are you off blood thinners? I thought with afib we had to be on blood thinners to prevent stroke.

  • Yes you'd think so wouldn't you but I was advised personally by a leading light of Afib Association (a specialist Dr). My Chads score is low and the trade off was risk of stroke vs risk of bleeding.

  • I only had para af but ablation put me into permanent af.....I have no symptoms ....and feel it is probably better for me to be like this than the stop start af I had before..I ski cycle play golf...drink and eat what I want...I self monitor my inr....which I think is so important...and I have lived like this for nine years...so be careful what you wish for

  • I know what your saying and if I was symptom free 'd be the same. unfortunately I have lots of symptoms and I can't even walk from one room to the other without being breathless. I have not got the quality life I used to have and I will do whatever it takes to get there.

    You are very very lucky being symptom free.

  • What drugs are you on as how much of it is the drugs and how much the afib that are causing the symptoms......I don't really know but I for one cannot take beta blockers

  • Hi Abihel.

    I am in permanent AF . When I was only on 2.5 mg bisoprolol I was breathless and even when this was reduced to 1.25mg , stairs and walking uphill were impossible some days. I changed to diltiazem instead and am much better. I am also on a very small dose of digoxin. I was told that as I have no real symptoms then any type of procedure would not be considered.

    A lot of people on here have felt breathless on bisoprolol so I just wondered if your GP had suggested an alternative?

    Take care

    Marion

  • Thank you Marion....I have mentioned this both my GP and EP but both have said they are the best thing for me.....I'm not so sure

  • OK I am reading my way down here and just commented Abihel to check out what drugs they were on....I am also on digoxin and diltiazem as well as pradaxa and they are ok...I can exercise fine

  • It might be the bisoprolol that stopping me then?

  • I am back in persistent AF following a cardioversion in September that only lasted 4.5 months. I am like you very symptomatic and am awaiting an appointment with an EP to discuss ablation. Although I am not sure if it is the Bisoprolol that is causing the breathlessness, sometimes feel I am struggling to breathe even when doing nothing. Other days not so bad. The anxiety levels seem much less though now I am back in persistent AF as not constantly waiting for it to happen. The Cardiologist has suggested I go back on Diltiazem (which I took before the persistent AF) to try and alleviate the breathlessness. Hope you can get sorted out soon.

    All the best

    Brenda

  • Thank you Brenda...here's hoping.....fingers crossed for both of us xx

  • Would be interesting to go back to the Diltiazem and then post and let people know if the breathlessness goes away.....I have a sense it will from what people are saying

  • I have been taking Diltiazem instead of Bisoprolol for a couple of weeks now and glad to say I feel much more like myself. I am still getting breathless though not got that awful wheezing feeling I had before. Have an EP appointment in June and still unsure whether to have the ablation if offered. Bisoprolol definitely doesn't agree with me as have also realised it was making me depressed, don't know if it has affected anyone else in this way. I had put the depression down to losing my Mother last year but now realise the Biso may have had something to do with it.

    Brenda

  • I really stuggle to understand the nature of permanent/persistent AF

    So if you have these and are able to carry on exercsing etc with no debilitating symptoms than what exactly bar a anticoag are the other drugs used for.

    I spoke with someone the other day who is permanent AF who takes 800mg dronedarone daily, so what is the dronedarone doing if you are never going to revert to NSR.

    Very confused, as this guy since being permanent is fitter than when he had PAF for five years, when I am in AF last thing I can even think about doing is any exercise.

  • Hi Mick

    I am in permanent AF - and thankfully was diagnosed by pure chance in 2012. I have no real symptoms and had no idea that my heart was racing and irregular. My body just got used to this fast rate.

    The meds I take now just slow down my heart rate. My body is now used to this slower rate and I can't stop these meds now.

    My only form of exercise is walking about 4 to 5 miles most days.

    Take care

    Marion

  • Being in permanent AF does restrict you life quite a bit and you have to manage it within the limited and they are different day to day. In my case I don't know when exactly I went into persistent AF but I know by the time that I was officially diagnosed I was able to do less than I had dome a year previously.

    I had an ablation on 30 Mar. I was very lethargic (though could walk at least a mile each day) very heady, drained, etc. Typically my SpO2 level was 89 to 95 for 95% of the time which meant my blood was not properly oxygenated. Had the CA and part of the report said exit block demonstrated in 3/4 veins. During the first 70 hours afterwards I felt fantastic to be in NSR and wow did I feel better than for some years (though I did not over do it in any way). However I then reverted to persistent AF. Now, although in persistent AF, I feel better than I did just prior to the ablation but nowhere near as good as in the 72 hours afterwards. However my SpO2 level has now gone to 95% to 98% for over 95% of the time, so my blood is getting better oxygenated. There has been no changes to my medication.

  • Marion so which med do you take, I imagine it to be a rate control not rhythm.

  • Mick

    Diltiazem (120 mg) and a very small dose of digoxin (62.5mcg)

    Marion

  • I am same diltiazem, digoxin plus pradaxa so very interesting

  • Are diltiazem & digoxin not both rate control.

    I am looking to get off Bispoprolol onto to a different rate control, I am mild asthmatic and should not really be on Bisoprolol, plus not to chuffed on how breathless it makes you.

  • I know I have been given Digoxin to slow my heart down..now taking 250 as 125 didn't work, also taking 10mg of bisoprolol and I get very breathless. I don't actually know why I'm taking both???

  • wow that's a lot I only take 2.5 Bisoprolol and that seems to get me short of breath

  • Hi abihel. Are you sure your excessive breathlessness is entirely due to your AF? Other heart conditions can cause this. Have you ever had this checked out?

  • P.S. I don`t think you should have to take that amount of digoxin/betablockers. What is your heart rate? How old are you?

  • I've had numerous ECG'S and Echos .I'm 52 and my last reading was 92 bpm and I was taking 10mg Bisoprolol and 125 Digoxin...they have no upped Digoxin to 250, I also take warfain, I also think it's a lot....but my EP doesn't seem t listen an says this is the way forward.

  • Presumably then, you haven`t any other serious heart defects, otherwise you would have been told about them. You could go for the ablation. It may work, but if you`re in persistent AF, then the chances are less likely of success. If all else fails, you could consider Pace and Ablate. This will involve you having a pacemaker and an ablation to destroy your AV node. This should cure your AF symptoms, but you will be reliant completely on your pacemaker for your heart rhythm. Talk to your EP about it.

    Read up on it here

    atrialfibrillation.org.uk/f...

  • Thank you so much for taking the time to help me. I will be looking into everything you have said.

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