MAY 2020 lasted 9 months and was fo.lowed by three electrical cardioversions in six weeks. Leading to another urgent ablation...
No.2 April 2021, lasted five months. Followed by four more cardioversions in four months, leading to another urgent ablation...
No3 Jan 2022, lasted three months, since had two sessions back at A&E.
Takes me about five months to recover from each one and even then it is not full recovery.
So after the last episode on Saturday it has been strongly suggested I have a fourth ablation! I have said that three ablations in the last 25 months (actually it was 21 months) is too much and I need a break. So it's going to be amiadarone for me until I can face yet another ablation. I know all the horror stories and do not wish to hear any more, thank you. It also seems the toxicity was associated with old high dose regimes.
I was on it previously with no problems and it seemed to work well so I'm hopeful I can tolerate it for a few years. I also hope to get off the anticoagulants as they are playing havoc with my nosebleeds and anaemia is another risk factor for afib!
I really felt I was between rock and a hard place with this decision, but have been advised by my cardiologist its a good idea to try it, whilst my EP advises the ablation. So someone had to decide! So thats my little story... unless I change my mind again!!!
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Jajarunner
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Sounds like a good decision, hopefully you will tolerate the drug and have some respite. I have recently watched some YouTube videos about amioadrone made by Eps and they said that many of the bad side effects are related to the early days of the drug when doses where in the order of 600mg a day. One said he sees less than 10% of people with mild side effects. Another said he has never really seen anything on doses around 100 ton200mg a day.
Hi this is very helpful have been on amiodarone for nearly a year now waiting to get ablation done currently on 200mg but was thinking of reducing my dose to 100mg any thoughts on this cheers
I read it worked well and I was on it (100) for most of my previous six months. I have asked for it to be considered this time. I saw on the net they are trying out even lower doses too
It's not an option that's been offered to me, and I definitely need a break from al, procedures for the moment.But thank you for the suggestion which I shall bear in mind when I feel able to rejoin the fight. Take care
I didn't read your originally post carefully enough. Does sound like you need a break. Have you tried Flecainide or Multaq or have they been ruled out?
I’m in the UK, and was put straight on Multaq (dronedarone) when AF was diagnosed. I have had a couple of episodes while on it though. Also, getting a generic version by Aristo rather than the original Multaq.
That's not my experience. I was on dronedarone before they tried amiodarone and I back on dronedarone now...have been for about 9 months. No issues with it. Just need regular blood tests. I'm in Wales.
Not available at my cardiac centre yet and it does have a high complication rate for women, so I read. It'd be nice to get it done when I can face number 4 though. Thanks for the suggestion
I wish you well. I've tried all the drugs over the years and the only one which worked, albeit not 100%, is Disopyramide. Has this been mentioned I wonder. It works best for vagal AF
I've never heard of that one! I'll mention it when the arrythmia nurses call back. Mine always comes after sleep so is vagal. Thank you for the tip. Have a nice weekend x
Disopyramide is quite an old drug and not used alot these days. My EP told me that I am the only one of his patients on this ! Definitely worth pursuing if Amiodarone causes problems.
I’ve been taking Disopyramide (Rythmodan) for 35 yrs now for AV reentry tachycardia and am still on it for PAF as well as my Bisoprolol. Nothing else ever worked for me
Yes I know! Still have difficulty now as it's an 'old' drug and have to keep swapping from 100mg tabs to 150mg tabs whatever the pharmacy can get! I recently reduced my dosage so am stockpiling the spares!
At least you have made a decision Jaja and that’s half the battle cracked 😉
Given all the recent interest in the MiniMaze option, it’s certainly worth exploring but with so few doctors able to carry it out here in the UK, I think the reality is that it’s going to be a blooming long wait to get it on the NHS. Although not many relish the thought of taking Amio long term, many do and they do well but keep a close eye on your thyroid function. Certainly a good idea to take time to get things right…….
JJ I know exactly how you feel. Caught between a rock 🪨 and a hard place. I hope that your decision is the right one for you and wish you all the very best. X
Totally understand why you'd make that decision understand the circumstances and yes - it IS a 6 month turn around post ablation - not 3! I looked your drug, which is a potassium channel blocker and all I can add to the mix is I saw Solatol also on the list, which others often mention here. When I was discussing possible ways forward post my unsuccessful first ablation my arrhythmia nurse said that being offered a Calcium channel blocker might be suggested as these are thought to.help with remodeling of heart's behavior. You're taking charge of what YOU want. Sounds good to me.
Sadly, calcium channel blockers (verapamil) reduced my HR so quickly I collapsed and was bluelighted to hospital. Which is a shame as I hear it is a good drug especially for sporty types like me. Thank you for your support x
Interested in your experience as a sporty type. I too am sporty and try to regularly do running, cycling swimming and gym. Originally diagnosed with A Flutter, 2 ablations in, that seems to have been resolved but I have now developed AF. Low dose of Flecanide seems to control well with the occasion AF (every 3 to 4 weeks) sorted by PIP dose ( resolved within 4 to 5 hrs). Episodes triggered either post excess alcohol (very rarely these days) or during exercise though last ride I was not even aware. Took beta blockers for a time whilst paroxysmal Flutter but absolutely destroyed any attempt at exercise (suppressed ability to increase heart rate) and demoralising so agreed with consultant to come off it. I’m currently going through a period of no performance improvement and not even getting back to where I was pre-Covid in Jan 22. Wondering if there is/ has been a long term impact from Ablation (Nov ‘21) or ongoing taking of Flecainide (nurse says not) or whether Covid or over training (or other training issue) or just plain getting older (57 yo) is the reason or if maybe there is some other as yet unidentified medical / physiological issue.
Maybe I should start a new thread just for “sporty types” to share thoughts?
I was slower when I started running but so unfit. I've read ablations slow you down, but also that they don't. I'm slow enough already!My afib never comes on with exercise only with sleep!
Interesting about exercising. Firstly, I guess everyone’s AF is not exactly the same. I had paroxysmal AF in my late 40’s for some years before it was diagnosed, putting it down to anxiety. At that time it was accompanied by very high rate. Some years later it became permanent AF, in 2003. I was given Warfarin, Digoxin, and beta blockers. Any exercise other than very gentle walking made me breathless, with high hr and that horrible feeling in my chest. The Dr said about exercise, "do what you can do”. After a few years by accident we found I functioned a bit better without the beta blockers, being less tired. 13 years later at age 69 I finished work and started to cycle short distances. Two years later in my earlier 70’s I was fitter than I had been in years. I could and can still ride 20 to 30 miles on a road bike, acknowledging hills are a bit more of a challenge.I have not had the accompanied Tachycardia, just higher rate associated with exercise. Now, approaching 75, I’ve lived with AF for nearly 20 years, far too long I’ve been told for cardioversion to be successful. Ablationwas offered but with 60% success estimated, and maybe needing more than one.My story shows exercise can be enjoyed, but amateur athletes, (I wasn’t), will have to accept reduced performance. I’ve been able to keep up with friends at a pretty reasonable pace on my road bike, but am now considering electric help, being sensible as I don’t want a hill named after me! If only I’d known what was achievable with AF all those years previously, but at least I can pass on my experience to encourage others.
I strongly recommend an electric bike. I bought one to use during my recovery from ablation no 1. It was a godsend! Easiest setting is little easier than a standard bike as the bike is heavy, but strongest setting gets you up my steepest hills easily. Just be aware the range can be quite limiting depending on what you pay though you can buy a spare battery pack. Onwards and upwards xxx
Thanks Jajarunner, appreciate advice. Got my eye on a road bike about 13.5K, so hopefully not too heavy for the flat with some help on the hills. If range up to 30mls, I’ll be happy.All the very best with your AF solutions, not the worst thing we could have, but a blinkin nuisance all the same.
Oh Jaja sounds like youve been through hell and understandably want a break. Hope things settle with the drug so you can recoup before considering next stepd. Take care. X
I totally understand your decisions. Having ended up anemic because of the noacs and having been turned away from from the hospital on the day of my first ablation because of it I decided to put up with the AF episodes and just take the Sotalol. I'm not going to have any abalations as I can't take the anti coags so that's that. I will just get on with my life in-between episodes and accept my lot. I refuse to go through life being afraid of what "might" happen if I don't do this that or the other. Good life to you.☺️💖
That all sounds so full on , bet you're feeling fed up and tired. I know that everyone is different but I was on amioderone for just over 6years. Monitored with blood tests every three months and a chest xray every two years. It worked well for me with no real problems. Unfortunately it stopped working nearly 2 years ago and on now in permanent AF . My decision is whether to carry on with the medication route ( just had it tweaked again) and the ups and downs of feeling ok some days but the uncertainty of not knowing when the bad days will hit OR have the pace and ablate! It's the indecision isnt it of not knowing which way to jump. Personally and with my experience with amioderone, that's the way I would go if it works for you. Good luck. Sue
Sorry for jumping in Nannysue but please also consider a third option when making your decision and that’s surgical ablation (mini maze), it is available in London on the NHS although I suspect many EPs still not aware. It is carried out by the Cardiothorasic surgery team. Here is one lady who does minimally invasive afib surgery in London if you can get a referral to discuss and then compare to pace and ablate.
Hi there. Yes thanks, you've already replied to a previous thread of mine when I asked whether to pace and ablate ir not ❤ and provided me with some very useful links. I have also discussed this with my EP who doesnt think that this would be an option for me, I think due to my HCM. Sounds like this has really been a game changer for you, happy to hear a success story . Sue
Absolutely no problem. I think that I'd be yelling it from the roof tops if I found something that "fixed" the problem 🤪 can I just ask, is it a permanent fix or something that will need changing or doing again, in time?
It is usually long term, if you get to 5 years like johnMiosh then the surgeon said it’s not coming back! I need to go and look out the research but from memory 75% are still in NSR after 5 years so a very high %.
It also stops the heart weakening as no longer in afib and as left appendage gets clipped it lets you get off blood thinners if that’s important to you. Which is different from pace and ablate.
Have a consultation with a surgeon, (even if you can afford a private consultation) then you’ll know and if they tell you you are a candidate you can push your EP to refer you or your GP can do it. If they tell you you are not then you’ll know that option is out.
Wishing you well, it’s your body, your decision. For myself my life has changed with a Pace and Ablate but everyone is different. Hope you get some relief x
Still wobbling on the fence myself about this decision!. Just had another discussion with my EP and my doctor and I'm finding it such a big decision. You know when you are at the top of a hill and want to ski down but need someone to give you a shove! 🤪 that's where I am!.
I’m the same nanny Sue EP wants another ablation or pace and ablate, I’m against pace and ablate, it feels to final to me with so many new treatments on the horizon. Lots of people on here say it’s the best thing they’ve done, but I’m going with my gut feeling.
It's not to be taken lightly. However my cardiologist and his hospital plus the cardiologists at the big trauma hospital are dead keen on amio. But my EP us not. Personally I think he sees it as a failure of his skills hence wanting me to have the fourth "touch up" ablation...!
It is a huge decision as it is so final. I’m 72 and felt like I wanted it while I was still physically fit enough for the surgery and able to recover well. Also my drug options had run out. I don’t regret it but we are all different with different circumstances. Good luck whatever you decide to do x
Hello, had my Pacemaker last June. I was meant to have my AV node ablation six weeks later but with Covid delays it was nearly 6 months just before Christmas.I came off everything except for rivaroxaban but unfortunately migraines that I used to suffer with came back with a vengeance as the beta blockers kept them away so I now take propranolol but for migraine not AF.
I didn't know you can have av node ablation done when you have a pacemaker fitted - interesting. Propanalol helped lessen my migraines & tachycardia but was taken off if as they said it was reducing my lung capacity. Helped a lot at the time
I have followed your experiences over the last couple of years and I felt so much for you each time you had your hopes dashed. You have really been through the mill and I can't blame you for wanting a break from it all. Really hope the new regime gives you some peace! x
I really get this. I've had 2 ablations and 2 rounds of cardioversions in quick succession, and an emergency admission. The 2 ablations just a month apart. Nothing has worked for more than a day. The plan is for another ablation in a couple of months. I feel battered and want a break but also advised by cardiologist that the surgeon might read that as me being disinterested in a third, which I am not. I just want a rest, and to be able to return to work. Been off for 4 months. I also, it seems, need quite a while to recover after the ablations.
I know you don't want horror stories but re amiodarone...I was only on it about 3 months prior to one of the cardioversions. Worked extremely well. Best drug I've ever taken for heart but I now have underactive thyroid due to it (though I may be predisposed as my mother has underactive thyroid) but upshot is I can't take it again. The effects of this med do need to be taken into account, which I'm sure you and your consultant are doing.
All decisions are to be respected and applauded, its not easy. Especially when you are not feeling your best. I feel I'm forever agonising over something at the moment.
Thank you. I don't know if its the same for you but for me its the uncertainty between things that's often the most challenging. The "will they, won't they?". Its been a rollercoaster....and I completely get the pull to be off that ride for a while and just settle with one course of treatment, whatever that may be.Truly wishing you all the best x
And the fact the EP thinks the recovery time is two weeks. That was to be able to run again! In reality more like 6-7 months! This latest ablation on offer is a "quick touch up" but I'm cynical about how quick it'll be to recover 😀
I know where you are coming from with all the procedures.I have to have an angiogram prior to my valve repair surgery and told the surgeon, I wanted the CT scan version, rather than the invasive one. He ummed and ahhed and asked why, as the invasive one was more accurate and I explained to him that I was fed up with being poked and prodded and things shoved somewhere they shouldn't be in the past 12 months and facing open heart surgery, so I just wanted a simple procedure for a change.
He agreed, but if it's not conclusive, I'll have to have the invasive one. You just get to a procedure saturation point (I have gallbladder issues as well).
Have been on and off Amiodarone for the past 4 years (I think🤔) and I do have corneal deposits but not aware of any other issues.
Your story is familiar, I am sure, to many of us. And quite a frightening augur of the sort of vicious downward spiral one can all too easily get into when caught between the lonely rock of AF taking our lives apart and the hard place of medics with 'hammers' for 'nails', that seems our only recourse.
I have been there myself over the 13 years since I was formally diagnosed. Not just the ablation/cardioversion escalator but the lottery medics like to play with anticoagulation (on which they have done a complete 180 over the past decade).
Kudos to you for taking a timeout.
AF pretty much finished my career and as a result my marriage. Consequently, I have had the luxury of a bit of a break (part-time doctoral research and de facto early retirement) in which to sort things out myself.
Despite (or because of) which, I got stuck in AF for a month in January. Then cardioverted myself. Then had a TIA. Got put on the anticoagulant I had up till then been denied (new policy: you have to get a TIA to acquire the means to avoid one ...). Suffered a series of serious UTIs (a known side-effect and contraindication of this anticoagulant) etc..
So, I too was looking down the barrel of a life on statins, alpha-blockers, beta-blockers, channel-blockers, and anticoagulants, or repeated ablations and cardioversions in the hope of just making it all stop. But then we know that AF is degenerative, right? AF begets AF.
Well, I value my independence. And I don't like taking drugs. And it has always seemed to me that these well-meaning medics (private as well as NHS) are just going through the playbook, often as not to protect their own backs and in doing the only thing they know to do.
Oddly, I had no AF during my repeated UTIs (inadequate antibiotic administration due to misguided policy and a green GP). And I had deferred the statins, ceased the anticoagulant and didn't need the other stuff (although I found the alpha-blocker very relaxing for a spell).
So, I was off all the meds. But then on a hunch added NAC to my regimen of B vitamins (I was accidently found to have very low B12 last year) and other routine stuff we all use.
Since I have Gilbert's (modestly raised bilirubin) I figured NAC would help boost the master antioxidant GSH I am a bit lacking in, but also combat E-coli biofilms in my bladder, plus it has anticoagulant and anti-platelet action, and would boost production of T3 in mitochondria (I figure I am probably subclinically hypothyroid in terms of T4 to T3 conversion too).
Net result. I have resumed no other prescription meds at all for at least three months and I have experienced no lasting AF (just the odd ectopic/palpitation - I am quite sensitised to those!) and I have had to take none of the PIP flecainide that is my longstanding companion.
I have since added ALA (it recycles GSH and chelates metals) to my NAC, along with a little vitamin C to aid absorption. And I am punctilious about maintaining sound B vitamin status.
Of course, it's summer, a few months is not a long time, and maybe whatever triggers ignite my particular lone paroxysmal (largely vagal) AF substrate have just taken a holiday.
However, had I had another ablation or other mechanical band-aid or been subject to some other novel medical procedure the docs would be declaring victory and writing articles now.
So, early days. But my point is, despite all the reading I am sure like me you did, there may be other ways.
GPs and Cardios don't look much at bloods, especially 'within normal parameters'. But we all should, and keep careful records. Lone paroxysmal AF is a diagnosis of exclusion. Look out for other subclinical signs - incipient diabetes, thyroid, liver etc.. Most of all, check your B12. High homocysteine, high glutamate and low glutamine are known concomitants of poor B vitamin status and of AF (endatrialfibrillation.com/) but medics can be a bit lax in following through.
Anyway, fingers crossed, where I am concerned.
And my very best to you too. I'm sure you've heard all this before but thought I should share.
(Watch me come crawling back sometime soon all contrite and a little wiser!)
Good luck. I’m in essentially the same boat as you with four ablations and lots of cv in between. Tried every drug regime too, including Amiodarone which was highly effective. You’ll be fine. Just do the tox screens for the lungs … and watch if you turn green (literally!). My next stop is likely pace and ablate but so far so good with metoprolol and flecainide.My only concern for you is your stroke risk. Any chance you could reduce the anticoagulant to mitigate the nosebleeds but stay on an anticoagulant? My fave is Xarelto at the lowest dose. Again, good luck!
Thank you for that feedback. My chad score is 1 I think (just for being female) so really low. I always know when I am in afib so would think I don't need it if the amiodarone works? I will discuss that further once I get this sorted out. The many and generous replies on here have suggested a few drug alternatives so I am asking my arrhythmia nurses about them next! Good luck to you with your ongoing afib xx
BTW, I now take digoxin alongside dronedarone. To keep heart rate lower.I should also have said that I'm on these meds just "in case" they do a third ablation. If they don't go down that route they'll switch tactics to rate control rather than rhythm control as, essentially, none of these drugs are working to maintain NSR. But I am 18 years down the AF track.
You know what you can handle and it sounds like it’s been a rough time. I was the opposite so it shows how everyone is different. Yes amiodarone was not for me and my ablation at least did some thing for me and next day I felt better. If you can handle amiodarone it sounds like a good choice for you there are others on here that have been on it for quite a while.
Hopefully by the time you decide you can handle another one it will be a better type. I just had a vein of Marshall ablation and it has been rough recovery but in six weeks NSR now. As of last night I am off everything but blood thinner. It appears that the problems I’m having may be related to Metropolol. If not for this site I would not have been aware of the side effects. It is your right and body to question everything and I wish you luck you sound exhausted and need a break
Jajarunner, Some good news... My mother has been on low-dose amiodarone for over 23 YEARS, & she has never had another afib episode since getting on it. She will be 97!! You are right--it is primarily the high doses which seem to cause issues, but then only in some people. Metoprolol is working for me, but I would not be afraid to take amiodarone (or dronedarone, a similar option without the iodine component) if I needed to. The best part for my mother has been that she's had NO side effects from that dosage. Prayers and best wishes that it will work similarly for you--you have been through more than enough with "our friend", afib!! Diane S.
Ha ha, yes, she's strong. But she's been blessed in never having any other condition or disease her whole life--except a little arthritis in her knees, amazing. And imagine how that would feel, 23 years of never having another episode of AF after her first few times got resolved with amiodarone, after 1 brief hospital stay. All 4 of us kids have had chronic health issues, some serious, in spite of eating organic food, exercise, "clean living." My sister and I always say, "Mum looks better than we do."
Wow! Your mom is made of tough stuff! So glad to hear of her success. That gives me hope. My EP says I’m too young to take amiodarone (I’m 66). But if that’s the drug of last resort, then I will hope to make it to 90 at least! I’m on dronedarone at the moment, been through lots of other meds that have all stopped working. Though we do think my afib was fixed by my 3rd ablation, I’m left with frequent (several times a week) tachycardia. The dronedarone has kept the bouts shorter and slower, but not eliminated them.
Good to know dronedarone is working for you. I'm keeping it in reserve, though metoprolol is helping me now. I had not heard there's an age related to taking amiodarone; maybe they don't want to start it too soon in life... but Mom has never had any side effects we know of in over 23 years. May we all have such good results! Blessings and good health to you, Diane S.
And, lovetogarden, I think the trick for Mom was in keeping her dosage to 100-150 per day. Have read studies indicating that's a good dosage (or even slightly higher) to prevent unwanted side effects.
Will you be having the procedure done at the same place with same doctor? Please note that when I changed doctors for my second ablation, I had much better results. Just a thought...
It's one of the uk's best hospitals, specialising in cardiac stuff. Two different EPs. The fourth one was described as "a little touch up for flutter" but I still can't face another five months of recuperating!
Best of luck with the decision you have made. Would it be worth thrashing out with the EP and the cardiologist the reason for the difference in opinion?
The cardiologist says amiodarone since ablations are not working for me especiallywith my genetic disorder. EP says ablation as, well, he's a EP and that's what they do. The third hospital, big trauma centre where I am regular for my cardioversions (😀) was equally cynical about ablations....
Maybe speak to the EP and ask why he thinks a further ablation might work given that previous ones haven't? It might be worthwhile to get each of them to provide a detailed justification for their views and why they think the other party is wrong,
Sounds like you having a bit of a nightmare, know how you feel, with 3 ablations failed I would think about your next one carefully with your EP choice, try and get referred to the most experienced in the UK, I felt that Prof Richard Schilling was that man for me in London, works in St Barts in London, if your GP could refer you to him I think you would have a fantastic outcome, his success rates are on his private practice on London AF Centre. You need an operator that has the top experience, all the EPs in UK look up to him
Ughhh… I can so relate to what you’re feeling. I’ve also had 3 ablations. The 3rd one (august 2020) has seemed to eliminate the afib. But I now have frequent tachycardia, which the cardiac nurses have said is pretty common. Driving me nuts and stressing out my husband. EP tried to zap it in the last ablation, but couldn’t trigger it. Chances of zapping it with another ablation is 50/50. I want better odds before I go through another one. And meds keep failing. At 66, I’m not ready to give up gardening, running, living! Frustrated! Wishing you well as you navigate these confusing decisions.
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