Amioderone or not?

My second ablation for persistent AF is due in early September. Been in AF 24/7 for 3 weeks now. Feeling a bit desperate. I have been offered a cardioversion to help me through, but they are reluctant to do it if I don't start on Amioderone. Frankly the side effects are frightening me. It took me a long time to get used to Flecainide which made me sick and dizzy at first. But in the end I did get used to it with gradual dose build up and it did stop the AF for a while, and does help with symptoms even now. The same with Bisoprolol which I can now tolerate..just.

On the other hand getting out of AF is supposed to stop the heart remodelling and improve the chances of the ablation succeeding.

I don't fancy my chances with Amioderone! 1 in 5 people seem to have a serious side effect of some sort according to the figures. Should I risk it? Or should I try insist on cardioversion without it? Or do nothing till September? It's just that I feel I always fall on the wrong side of the statistics. Not even feeling that optimistic about 2nd ablation to be honest.

19 Replies

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  • You are right to be s bit concerned but it is only for a short time to support you with the cardioversion. For my last ...3rd....ablation I was on Amiodarone for a few weeks beforehand. No problems. A cardioversion might well tide you over until September . Worth giving it a try in my opinion. And look on the positive side! ☺

    Best wishes

    Sandra

  • That's good to hear. Thanks for the reply. Yes the short time is a factor I should consider. 12 weeks in this case.

    But also I'm so pleased to hear about your last (hope that is "last" and not "latest") ablation. Hope you are still in rhythm.

    Hope you don't mind me asking but were you in persistent AF before? Did the EP go for a different area to ablate? I'm hearing a lot about Posterior Atrial Wall and Roofline as well as PVI.

    Thanks and best wishes,

    Janet

  • Hello again Janet

    Afraid " last ablation " should probably correctly be called " latest " as i still get episodes of fast AF requiring cardioversion. Last one 7 weeks ago.

    I'm classed as PersistentAF.....not permanent.....as I normally require DC cardioversion to restore NSR. Meds do not work.

    Yes, the EP did ablate other areas after the PVI.....cant locate my notes so can't say exactly other than it looked pretty impressive to me, a layperson!

    I don't think you need to feel scared. Just be aware.

    Sandrs

  • This just highlights the variations between different hospitals.

    At my hospital they have done a number of cardioversions on me in the past 10 years without a mention of Amiodarone.

    I was given it once instead of a cardioversion and I had to wait 2 weeks in AF until I reverted to NSR.

    I hated being on the drug. Not only did it make me feel very unwell I was also, like many, scared of the side effects.

    There was no evidence that it was the Amiodarone that cardioverted my heart.

    Hopefully you can talk to them about your concerns - it is your heart after all.

    Pete

  • Thanks Pete. That's interesting to hear and very helpful. Gives me inspiration for pushing back a bit!

  • Hi there, I'm sorry to hear you're unwell. Six months ago I went into persistent AF and my doc put me on amiodarone 3x a day. I cardioverted after a few days and he reduced it to 1x a day. Two months later. I had a cryoablation and went back into AF for three weeks. I've been in nsr since then and stopped amiodarone 3 months ago. I feel great now (not being too complacent) and feel it was worth taking amiodarone for 3 months as it did the trick after nothing else worked. We are Ll different but I hope that helps x

  • Hi Hellie, its great to hear you are feeling well! It was so good you had the cryoblation so quickly. I wonder where you had it? I waited 5 months for mine at St George's with one cardioversion while I waited. It will have been another 5 months waiting for the second. Your experience with Amioderone and no side effects is heartening after some of the stories I've read. It certainly helps balance the argument in my mind which is so helpful. I will hear what others say and make up my mind tomorrow.

    Thanks again x

  • Hi Janet, It was done privately at Alexandra hospital in Manchester. I've booked my first cruise in four weeks time. I've been too scared to leave the country these past twelve months.

  • That's fantastic! I'm glad your confidence is returning. I have similar reluctance to leave home. Have a great time.

  • After my first cardioversion I reverted to AF within about 36 hours (confirmed with my Kardia device). To that time they had been using rate control (Digoxin and Bisoprolol) in conjunction with Rivaroxaban, although my heart rate really didn't want to drop below 90-100 even after about four weeks. Normal for me was 70. After the cardioversion it did drop to around 65 but once back in AF it was right back up at 90-100. The chart shows the trend was downward around that time but only at about 10 BPM per month.

    The Cardiologist (no EP yet) decided he wanted to try a second cardioversion after getting me loaded up on Amiodarone. So I dropped the Digoxin and started Amiodarone 200mg - three times daily in the first week, twice daily in the next, and then once daily ongoing.

    The rate of decrease of my HR accelerated markedly and by day 4 I had occasional brief patches of NSR. These got longer and more frequent as my Amiodarone loading increased. After three weeks I went into NSR and have stayed there ever since (nearly four weeks now). During the Amiodarone loading my HR when in NSR was initially 55, falling to just over 40 where it stabilised.

    The rhythm control meds are the first thing that made a significant impact on rate or rhythm for me so far. And, as you point out, remodelling is less of a concern for me now.

    The second cardioversion was cancelled and we halved my Bisoprolol dose which is getting my HR back up a little - just under 50 most of the time now. We'll shortly start looking at what's next (maybe an EP and ablation?).

    I felt very much the same about Amiodarone as you describe - what sane person would not be worried reading about the side effects. My point though is that for me, this is the first thing that has had a material effect on my AF. I have not felt unwell on the Amiodarone (or the Rivaroxaban and Bisoprolol for that matter), at least not at levels that were distinguishable from hypochondria given my heightened state of vigilance.

    There are many here who have reported feeling truely horrible on various AF drugs, including Amiodarone, but there are also many who report that it was effective and without significant side effects.

    The concerning thing for me now is deciding what is next - I certainly do not want to be on Amiodarone for the next 25 years. I hope the Cardiologist/EP can give me some options in the coming weeks.

    So maybe give it a go? I have certainly suffered more self-induced (or internet-induced) anguish in my AF journey than I have from anything the Cardiologist has asked me to do. Of course it's your body and you should always feel free to reject something that is not working for you or that entails an unacceptable risk.

  • Justintonation hi. There is so much identify with in your reply! The internet induced anguish and the heightened vigilance are familiar to me. Anyway I am heartened to hear Amioderone worked and you feel better on it. That cheers me up. Like you I usually have a low resting pulse around 46 ( and mild heart block in my case) bradycardia is a worry for me. Maybe I will give Amioderone a go. If it worked it would be only 3 months to the Ablation and I could come off it a couple of months after. One thing holding me back is that I feel ok ish at the moment if I take things easy. Bisoprolol warfarin Flecainide and blood pressure tabs are doing something and my HR is about 80-90 and I only feel faint now and again which passes. I do feel I'd rattle if you shake me..so much medication!

    I hope you get a good plan for the future. I would say that one EP has told me that with long standing persistent AF it's better to ablate Atrial roofline, posterior Atrial wall as well as PVI s as the demon electrics have usually found a way through them over time. Will post the link that supports this if you like? Internet curse or blessing?

  • I'd be very interested in the link as, I am sure, would others. I read a lot of information on the Interned and try not to become too influenced/disheartened by it. I try to stay away from snap judgments and decisions and let alternative ideas accumulate as much as possible. If the experts think the condition can be managed with appointments 6 weeks or even longer apart I try to keep my "decision rate" at a similar number - being swayed by each paper you read can be an emotional roller coaster!

    The thing that has considerably helped my journey is buying an Alivecor Kardia device. Having the ability to see what my heart was doing several times a day was a big help in keeping me moderately active and less paralyzed in the early stages after diagnosis - mainly because the Kardia gives an accurate HR even while in AF (which my treadmill and BPM wouldn't). After a while I started understanding the ECG trace a little and there are quite good courses on the Internet if you want to increase your expertise/understanding on interpreting ECGs.

    I retired from a technical/computing career a few years back and have the ability to extract and analyse the data the device provides so I was able to write some software to chart and analyse my journey from AF to NSR as I loaded up on Amiodarone in preparation for my second (eventually cancelled) DCCV.

    Some people find that the device is just one more source of worry but for me it provided a great sense of control and awareness - possibly illusory! :-) As I am quite asymptomatic it provided an ongoing window into my progression that I would have lacked if the only time I saw an ECG was at the clinic. Over time it helped "train" me to feel whether I was in AF or not - those who find their AF unbearable must be having a good laugh at that!

    Be aware that the device only indicates NSR or AF for a HR inside the 50 - 150 range (you just get "unclassified" if out of range or the pattern doesn't get matched by the AF and NSR recogniser algorithms). I found after a while that all my traces with a HR of less than 50 looked like NSR (never found an exception) so I just grouped NSR and Uncassified with HR<50 together.

    All the best for your future as you thread the labyrinth!

  • Hi again. I too have the Kardia which is invaluable. The more accurate HR reading is reassuring - often lower than I anticipate when I take it. The data is good to show the cardiology team when they ask "Are you sure you have been in AF?". They are impressed by data!

    I see below that you could have the Hansen robot. But whether you have that or the fully manual operation, the paper I have found is about something different. It's about the areas of the atrium that are ablated. I saw an EP last week who said there's a much lower need for a re-do procedure with persistent AF when the first ablation takes in the Posterior Wall as well as the Pulmonary Veins and Atrial Roofline. He called it a "Box". Just one EP I know but the link below is to a paper about just that. I don't understand it all but the section, "Nonpulmonary Triggers For Atrial Fibrillation", supports his argument. At the very least it supplies some questions for the EP when deciding a plan.

    What do you think?

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

    BTW I am a 65 year old female from South West London.

    All the best to you.

  • Hi Janet,

    That's brilliant - just skimmed it for now but it looks very interesting. I'll give it a thorough read in the next couple of days! Towards the end of that video you can see some of the "dotted lines" defining the regions they are isolating - I assume the "box" is some variant on those patterns to reliably insulate a greater number of possible paths on the first ablation.

    Since retiring I spend a bit of time looking at the stock markets (more for recreation than profit) and some of the approaches I work with are based on wavelet transforms - wonder if its the same mathematics or just the same term being used.

    All the best.

  • Sorry - just realised that I've not mentioned in my posts that I'm a 62 YO male in Adelaide, Australia, so some of the local protocols may be quite different. My understanding is that if/when I get an ablation it would probably be done with the HANSEN robotic system at Flinders Private (video at

    but avoid if you are squeamish).

  • I had a cardioversion before my 1st ablation that lasted 5 months before it reverted to persistent AF. No Amioderone was given that time.

  • Thank you for replying. That's useful to know. I am glad the first cardioversion worked for 5 months without Amioderone. You did better than I did. Mine lasted 3 months. I see from your profile that you've had a tough time. What awful bad luck. I feel for you. Let's hope for that miracle.

    Best wishes

    Janet

  • Thank you to everyone for your comments. I decided not to go with the Amioderone for now. I am having the cardioverdion without it, although a shortage of anaesthetists means it's postponed 2 weeks. Then it will be hopefully only 6 weeks to ablation no2. Hope I've done the right thing. It was good to hear from people who've done well on Amioderone and means if I take in the future will do so with more confidence.

  • I also have persistent AF.

    I tried Amiodarone some time ago and simply couldn't function with the side effects. It totally wiped me out. I loaded up a month or so ahead of a Cardioversion which worked. I then stuck with it for a couple of months (thinking I would get used to it) but my heart inexplicably flipped back into AF! I then stopped taking it. I was relieved in a way because for me the side effects of the drug were worse than the AF.

    Since then I have pursued the ablation route and have been dabbling with nutrients and vitamins etc.

    Good luck with your second ablation.

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