I've been for an ECG this afternoon the results of which are being passed to the arrhythmia nurse team at the JR in Oxford, where I had a cryo ablation last Friday. AF symptoms of breathlessness and feeling faint and then some for a couple of days and now a bit more settled but irregular and fast pulse.
I've no idea how quickly they'll get back to me but I want to have questions ready for when they do? So.... is cardioversion a viable option, is there a window in which it might work/ have worked successfully? Is it worth getting one privately (I could raid the savings if it would be money well spent and get done quickly). Can I avoid going back on amiodarone? It give me real trouble for the year I was on it ( sleep disturbance, skin issues etc.). Is there an alternative that might work on its own or in the lead up to a cardioversion? Or is it early days and I might settle into NSR without any intervention?
Is there anything I else I should be asking or already know?
Thoughts gratefully received as ever.
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JoDogBlue
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My experience of the cardio. nurse team at the JR Oxford has been excellent. They get back to you quite promptly. But I add my experience has only been with the congenital heart dept.
I had a cardioversion 2 or 3 weeks following ablation as I’d gone back into persistent AF after just a few days. I knew my chances of a successful ablation were less for persistent AF than paroxysmal. The good and wonderful news is that it worked! The cardioversion put me back in NSR long enough for the scarring to form and the swelling to settle. This was on the suggestion of my cardio team so I didn’t pay private.
Ive been in NSR since (for over six months) and that’s despite the fact that 2 previous (pre-ablation) cardioversions only kept me in NSR for a week or less. I did pay for one of those because there was a bad waiting list.
Good luck and hope things settle down fast and you get the treatment you need.
Thanks for your comments. Can I ask whether the cardioversion you had shortly after the ablation was through the NHS? I was told it would be several weeks up to three or four months before I could get one. I'm wondering whether, if that turns out to be the solution and I'm in PAF, I can consider private treatment as I could just about pay by raiding savings.
I'm not going to go back onto amiodarone, it wrecked me. Maybe everything will resolve by itself but I'd like to know what the options are.
And thank you for bringing up amiodarone, which was suggested to me after my cardioversion quickly failed. I've struggled enough with flecainide/metoprolol (which just about keep me out of fast AF most of the time -- stress events such as a D&V bug put me into it despite drugs -- but I'm in persistent AF despite taking daily flec./met.). I'm still waiting to speak to a cardiologist seven weeks after the CV failed, so in the meantime I'm reading up about amiodarone, and not sure I want to touch it.
To be honest I wasn't offered an alternative to amiodarone prior to my cardioversion. I know there were people there on the day of the procedure that weren't on it. I was still in normal rhythm six months after I stopped taking it, which is when I had my ablation. I hated being on it but it did the job I suppose. You start on a high dose to load your system and then drop to a maintenance dose. I found the loading horrible, I couldn't sleep or function. Once on it my main issue was extreme sunlight sensitivity. I spent last summer, such as it was, hiding indoors.
I had to ask my GP for and arrange regular blood tests. Don't think they'd have done anything otherwise. They were quite dismissive about side effects saying they have people who've been it for years with no problems. We're all different and you might be fine on it.
My mother (84, with paroxysmal AF) took it for approx 18 months and loathed it. A sun lover, she also struggled with the sensitivity you had, and she hated having to cover up and avoid strong light. She started on amiodarone during lockdown, which curtailed her social life; she had given up driving, cooking, smoking and drinking, and sitting in the sun made her feel good until that was taken away too. Perhaps she should take up smoking again if it makes her happier. At her age, the health argument is less persuasive (she no longer cares about life expectancy), and I say this as a lifelong non-smoker.
For myself, I'd be worried about the other symptoms you experienced (sleep disturbance + skin problems) and a similarly dismissive response from my GP, and whether I'd be able to get monitored if I asked for it. 'Monitoring' on rivaroxaban so far has consisted of asking me verbally, once in six months, whether I'm having any issues. Yes, I am, but I don't know which drug is causing them because I started on flecainide, metoprolol and rivaroxaban on the same day six months ago.
After six months I'm still in persistent AF, with just three days of normal rhythm since last September (possibly earlier) and that was due to DC cardioversion. The brain fog is better (I'm not normal but I'm not as out-of-it as I have been recently). The digestive upsets have calmed down (I had to go semi-demi low FODMAP to get rid of them, and this may be a completely unrelated issue). I need to get my eyes checked (vision has definitely deteriorated in six months), and I'm about to find out whether I can reverse the recent weight gain.
I take the drugs obediently because the object of the exercise is to try and stay out of fast AF while figuring out a way forward, with long waits for cardiology appointments. I know that AF is notoriously difficult to treat, it's a lot of trial and error, and I know that a lot of dedicated people in the NHS are doing their best in nearly impossible circumstances.
Anyway, good luck with your recovery, and here's hoping for success. The JR would have been my hospital if I had stayed put in Oxfordshire, but I'm on the south coast now, under the care of another big teaching hospital with a very good reputation.
Really useful reply -- I am also in persistent AF following a failed cardioversion (it did work, but only for 3 days) and wondering if ablation will work. It's encouraging to hear a success story. I hope this continues for you.
It’s disappointing isn’t it, when a CV doesn’t work! But success for just a day or two can indicate a successful ablation, so do get an appointment with a good EP to discuss further procedures. I paid for a consultation because I had many questions and wanted time for a good discussion. My EP works across both private and NHS. I know this is controversial and I’d rather just support the NHS!
Totally agree -- I did actually go private for a cardiology consult in the autumn because the wait for the NHS was just too long, and I had recently progressed from paroxysmal to persistent AF and was hoping for a speedy solution (nope). Same cardiologist, and this got me cardioversion several months faster. I haven't seen him since the cardioversion failed but we're due for a telephone appointment in two weeks, brought forward from the original follow-up date in late July. If he hadn't brought it forward I would have gone private again to get a faster follow-up.
I lived in the US (years ago) and still have family there. I have seen at close hand what their medical industry is like (and it is very much an industry, like advertising or property). It's great if you have plenty of money and can afford good health insurance -- but even with insurance, one of my family paid US $16,000 for an ablation last year. If you don't have money, it's hopeless. Medical bills are the no.1 cause of personal bankruptcy for Americans. It is obscene.
I despair of what's being done to the NHS and hope we can reverse course.
I've heard from the arrhythmia nurse (8 days after an ecg) that I'm back on AF. Its two weeks today since my cryo ablation.He said I've been put on the list for a cardioversion and we discussed amiadarone. Agreed I won't go back on it although it might help put me back/ keep me in nsr. I just don't want the side effects.
So I'll see how long the list is for the cardioversion. In the meantime he suggested getting a kardia so I can check and relay my af status.
I'm hoping I'll go back into normal rhythm before the cardioversion as it's early days, dont know if thats realistic. I'm feeling better in the last couple of days but still taking it slowly.
Im glad you’re on a list for a CV just in case needed. Hopefully not a long wait. I’m sure they’d haul you in for a cv fast if it was thought best. Your EP and team all want the best for you.
A kardia is a good idea. I bought myself an iwatch, recommended by my EP, and sent regular ECGs after (and before) CV and ablation. These devices are transforming communication with our arrhythmia teams.
Good luck and hope you go on feeling better every day.
Just to add I was on amiodarone before one of my CVs and it made no difference at all. I’d avoid it like the plague. The only medication I was on following my ablation and subsequent CV was the anticoagulant Apixaban.
Again I agree with everything Rainfern said. We’ve apparently had similar experiences. My first few days after my first ablation were bumpy. A CV put me back in SR and I stayed there for over a year.
Lots of us have bumpy post-ablation experiences, but then everything settles. Some of us don’t have bumps at all. May you be one of those! If not, don’t worry, keep your medical team informed, follow their lead, and wait for your wounded heart to heal and settle.
I also. fully agree with Rainfern about amiodarone. What an awful drug in terms of side effects. It slows nerve impulses to your heart and calms it (my tachycardia turned into bradycardia), but it also slows nerve impulses to every organ and cell in your body. My brain felt like mud. My muscles got weak. I am grateful that amiodarone helped me get out of tachycardia (though the bradycardia was no fun), but I’m determined to not ever take it again, except maybe as a very, very last resort. For me a good reason for getting an ablation is so you won’t have to take amiodarone. (-:
Others do fine on it.
Keep listening to Rainfern as well as everyone else on this forum This forum is invaluable.
Morning JoDogBlue, all I can give you is my experience and say I’m sorry you are unsettled since your Ablation. I’m now 9 weeks post procedure and had to put a call in to nurses as I was concerned regarding the amount of AF, fast heart, ectopics I was still getting this long after. She was extremely reassuring telling me how some people are in normal rhythm straight away, some are fine for a while then get breakouts and some could be six months or more before things settle and some people need another Ablation. She told me that no decision would be made until the three month period has passed as I was coping well with the episodes. The last couple of days have been calm apart from a few ectopics. I hope this is helpful to you as it really is very early days on your journey to be free of this horrible condition.
Thanks for your experience. The nurse said they like to restore normal rhythm if it's possible. Just a waiting game to see what they make of my ecg. Still early days I know and I'm making plans to do as little as possible next week.
I had a couple of weeks of hellishness a week after mine - then all settled and has been same since so may very well just be a blip- arrhythmia nurse said caused by inflammation from the procedure and pretty sure she was right - just needed some time
Thanks for sharing your experience. I'm sure you're right. I had in my head that I'd be feeling pretty good a few days in. As much as anything my bp is on the low side, a new experience for me. But my pulse rate has settled at about 90 pm now, rather than being all over the place. I'm hoping the irregularity may be ectopic beats, just need to wait and keep taking it easy (not an easy thing for me to do!).
My HR before was mid 50’s and post op was mid 70’s to 80’s - stayed that way for about a month then returned to normal (for me). I’m getting occasional ectopics - I can feel them but also I can see them on a Kardia - breathing in through nose slowly for 5 mins or so definitely helps here - very much seem to coincide with any digestive issues I might be having and/or if I’ve not slept well - Yep taking it easy is not at all easy 😂
i have had some ectopics since my procedure on Tuesday but fewer than before. My hand out says to expect them for three months, and it can include short runs of afib, because of heart irritability. After3 months I will have a holter monitor for a week and if all is clear I will be completely med free…
I hope it settles for you soon but it seems it is early days for you too.
First thing to do is to calm done and try to relax. I know from experience, it is harder to do than to say it. Second, it is not unusual to fall back into AFIB or to have PACs/PVCs after an ablation. I lasted about 3 days before I went back into AFIB, this was while I was on the same medication prior to the ablation, with the addition of Multaq. I had a cardioversion and was good for almost 2 months before getting short-lived AFIB, that went away, and then I got PACs for a couple of months. While I had long-standing persistent AFIB with RVR before the procedure, I haven't had much to talk about in the past 3 weeks. Still hopeful to come of the medications even now 7 months post ablation. Some of us take a long time to heal, and others it's seemingly overnight. You are still well within the blanking period and have a lot of options going forward. In truth, things have just started to really heal, and it will take some time to get there. Be patient and go back to medications for a while if needed. During this period, you are basically retraining your heart to beat properly. Good luck!
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