Feeling very downhearted :(

My second cardioversion on 1/9/14 has failed...I am so disappointed I have been suffering AF for 18 months now and it's driving me crazy and I wonder if it will ever be sorted. I was so optimistic in the beginning and was very positive.

After reading some of these posts I see some people have persistent AF some permanent I don't know which I have. What I do know is my AF is there all the time it ever stops !!! and it is affecting my life...I get breathless, tired. wheezy and can't walk very far.

I am waiting for an appointment to see an EP about an ablation and I am really scared but do want it doing. The relieve of being in NSR was unbelievable I was like a new woman, not like the 100 year old I had felt like before.

Sorry to moan, I know they say 'don't let it rule your life' but it's there all the time stopping me from living my life. If they offer me another cardioversion while I'm waiting I would jump at the chance even though my first one lasted 6 months and the second only 2 months.

Thanks for reading and letting me sound off..I'm 52 and work full time ( when I can).

29 Replies

  • As I understand it if you have persistent AF it means that although you have AF all the time, you can be converted into NSR, even though it may not last for very long. I gather cardio versions very rarely do last, however, it is a good indication that your AF MAY respond to other treatments such as ablations.

    If you have permanent AF you do not respond to any treatment and therefor the chances of having a successful ablation is much lower.

    I know this must be very debilitating for you and as you are so symptomatic very discouraging, it's bound to get you down. When you hope for so much it is horrible to have that hope dashed, moan anytime you like, that's what this forum is here for,

    Very best wishes CD

  • This is a very good resume of what is what! That your cardioversion worked albeit for only a short time is very good news as it means you are not permanent. Ablation is not too bad and whilst real the risks are greatly over egged . Life is a big risk! I have had three and been AF free for 6+ years and would go for a third at the drop of a hat if needed. Just make sure that you have been assessed for stroke risk (you must have been for cardioversion) and remain on anticoagulants as this will be necessary for ablation. Chin up it won't kill you even if it feels like it sometimes.

  • Thank you so much xxx

  • Thank you for your comment xx

  • Keep sounding off until you get relief! So sorry to hear things are so difficult. hope you get some relief soon!

  • Thank you so much for your comment xx

  • Hi Abihel

    I think the medics would class you as persistent, permanent usually means untreatable and incapable of being put back into NSR which plainly you are not.

    Thdere is another class like me, which is long standing persistent, for those of us who have been in AF continuously for more than a year, but then I do not suffer from th symptoms you describe, so being in AF for me is nothing like as bad. I get breathless and yes wheezy on occasions, but no longer the great tiredness certainly that I used to get, perhaps my body has just adjusted to it.

    I would say look the two CVs are to a large extent goods news, it tells you that your heart will relatively easily go back into NSR, and that an ablation has a very good chance of working and sticking, which is what you want.

    See the EP and get the treament plan sorted out between you I am sure this story will have a happy ending.

    Be well


  • Thank you so much for your comment xx

  • Thank you for taking the time to answer xx

  • Very disappointing, but please don't be too disheartened because it paints a bit more of the picture and your best way forward will be clearer. Your present problems won't last and life (instead of existence) will be all the sweeter when you get it all sorted.

  • Thank you so much for your comment xx

  • I think I know how you feel. I spent the summer of 2013 feeling reborn after my fourth cardioversion. However, the AF and tachycardia returned at the end of August and I really felt dismayed. I wore a heart monitor for a bit which happened to record just one night time reading of 40bpm, so it was decided I should have a pacemaker implanted. In the meantime, my Sotilol was increased. Then, in February, just days before I was due to have the pacemaker put in, I had a spectacular attack of AF and tachycardia,while on holiday in California, after which time my heart rate never fell below 110 resting and the Sotilol was increase yet again and Digoxin added. So, the pacemaker was put in to lie dormant in my chest. A fifth cardioversion was suggested but, as ablation had been mentioned on more than one occasion, I decided to push for that in the belief that it would have at least a more sustained success than the CV's. It took me some really frustrating months of pestering but, at last, on October 13th, I had an AV ablation and I promise you, it is nothing to be fearful of. I was sedated, and the procedure took just over an hour and I never felt any discomfort or worry at any time, even though I was fully conscious during the entire procedure I t was actually really interesting watching the monitor screen as they manoeuvred the probes over the area that was to be ablated. Then, I had to lie flat for several hours afterwards because the catheter had been inserted through artery in the groin and, as my INR was a bit too high, there was a small risk of a bleed which, of course, did not happen..

    The only post-op hiccup, really, has been that I naively, I guess, expected to be leaping about like a gazelle immediately after the procedure. I didn't know (and am now the wiser!) that the PM is programmed for a heart rate of 80bpm for a few weeks after to allow the heart a chance to heal. So, my gazelle attempts twice brought me literally to my knees. When I returned to the hospital last week, the PM was changed to adapt between 60 and 130, which makes a huge difference. I am hoping that when I go again next month that they might move it up a little more again to give me that extra ceiling of energy.

    I have read accounts of ablations failing, but I sort of think, hope, that is ablations without a PM. Whatever the case, I live for the moment now and boy! am I going to milk it dry!

    Good cheer and good luck!


  • Jos a normal ablation or pulmonary vein isolation is a completely different procedure and takes a lot longer than one hour. Usually four minimum. Your Pacemaker now controls you ventricle rate and you are now dependent on it. With PVI the natural pacemaker still operates and the procedure attempts to prevent the rogue impulses which cause the AF.

  • Maybe it was longer than an hour, Bob. But not much. I do know that I was "ablated" 56 times within whatever period it was. And don't forget, I already had the pacemaker in place. It was an AV node ablation. I am apparently still fibrillating but I am unaware of it, as the irregular. impulses no long get through from the upper to the lower heart chamber. Whatever, it would appear to have worked thus far

  • You are quite lucky then as I know people who have pacemaker and AV node ablation who can still feel their heart's fibrillation. As I said, AV node ablation is relatively quick, about an hour on average but proper RF, Cryo or Laser ablation for AF, as in pulmonary vein isolation can take up to five hours.

  • Thank you so much for your comment xx

  • Was it the AV node ablation you had? Not Pulmonary vein isolation?

  • AV node ablation. And now that they have "tweaked" my pacemaker down to 60bpm and up to 130 I feel vastly improved.

  • Thank you so much for your comment xx

  • Thank you so much for your comment xx

  • Nil Desperandum Abihel !

    At least the DCCV's worked , albeit not for as long as you would have liked.What is your heart rate & are you taking rate control or rhythm control drugs ( or both )? Hopefully you will not have to wait too long for you EP appt., depending of course on where you live.

    My AF started at the age of 48 - 22 years ago - & my first DCCV only lasted 3 months but did not set a pattern . Subsequently I have had a further 12 which have kept me in NSR anything from 4/5 weeks ( once ) to 4+ years. Also had 3 ablations & I'm still not right , but OK at the moment & it's still lovely to wake up in the morning! My AF is classed as persistent . It is always fast , anything up to 245+ bpm but often around 170/180 & normally requires a cardioversion to get me back into SR.

    I know it is easy to say ' don't let AF rule your life '. It is very difficult not to depending to some degree on your own circumstances & the support that you have. I know too well the relief of getting back into NSR after a cardioversion.

    Hope things get better soon. Any chance of another cardioversion in the meantime?

    Regards Sandra

  • Thank you for your comment My heart rate at the moment is around 110 BPM..I am taking Bisoprolol and warfarin. I'm sorry to moan but just sometimes it does get you down. Normal every day things are such an effort when normally I can sail through them, walking ( not very far at all) and I'm breathless, bending, reaching and I can't rush doing anything. I just want to be better like I imagine the rest of the population who suffer with AF do. xxx

  • Hey! I am so in your shoes, Abihel! I gather from BobD that the PVI is the last resort procedure and takes quite a long time, compared to my AV node ablation (the penultimate solution) which took not much more that an hour (more if you are not already fitted with a pacemaker) but I have to say that I feel so much better not being constantly aware of my heart's erratic behaviour. It now beats as regularly as it ever did before all this business began about 7 years ago. And I am hoping that a bit of further tweaking and natural healing will have me - well, if not ready to climb Everest or run the London marathon, at least able to make a quick dash for a bus without fear of keeling over. So, be not faint hearted (appropriate, yes?) For the time being, do what you can do and b****r the rest!!

  • Please don't be scared about having a PVI ablation. I went for mine telling myself that Bob had insisted that canal root dentistry was worse. I fully intended to disprove that BUT I had to admit that he was correct. I think it would be easier if they were able to access the heart from somewhere other than the groin - the paper knickers were a god-send and you go home the next day. There are a million procedures that are worse, and AF is so debilitating that you really do need to take action to be rid of it.

    Good luck.

  • Thank you so much for your comment xx

  • Sorry to hear this- Did they also give medication to have after the cardioversion?

  • Hope you get a result soon. I know exactly how you feel. Little more than a year ago I felt like I was 100. I had almost no life at all, could hardly walk, it was terrible. Eventually got to see my EP after ages trying to get round my GP's, which is another story. He put me on drugs which didn't work, then another which worked OK'ish, then a third which is working a treat. Now back to normal except lost condition a bit so not quite as fit as I was yet.

    See you're waiting for an ablation which is good, but have they tried to get better drugs for you in the meantime? I had to pester a bit for my changes. Started with Fecainide, then Propapfenone, then Disopyramide. Went direct to the EP's secretary by phone or email, and told her they weren't working each time, which resulted in a response for a changes within a couple of days.

    I had an ablation 10 years ago and it kept me clear, till now I've got something different. Had another aborted one recently. The ablations were a breeze, really nothing to worry about and I'd willingly have a 3rd no problem. Although got to say the drugs are great at the moment.


  • Thank you so much for your comment xx

  • I feel your pain... Being very physical and competitive acting more like I am 40 than closer to 60 AF kicked my A** and showed me who was in change, that I am no longer in control. Just had my first and hopefully only TTC CV a few days ago. Finally got thru a full 30 min video and pushup workout without thinking I was going to die today. So nice to have a stable heartbeat without the cha-cha going on in my chest. We said in the Marines, "Adapt improvise and overcome"..

    And I now add "This too shall pass; now would be good" and in time you will regain control as I have come to believe..

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