I've been in constant AF since day two following a cryoablation nearly four weeks ago. I'm guessing the trauma of ablation is contributing but my AF symptoms are much worse than I've known before.. very easily breathless, light headed, frequent need to pee at night, pounding heart 105 bpm. I'm headed for a cardioversion in the next couple of months and the arrhythmia nurse has asked my GP to prescribe amiodarone.
I've been on amiodarone before, for 12 months, in the run up to and after a successful cardioversion. I stayed in normal rhythm six months after coming off it up until the ablation. So it did it's job but I hated being on it, I experienced extreme skin sensitivity, sleeplessness and weird dreams when I did sleep. I told the nurse all that.
So do I bite the bullet and take it again or take my chances without it? Would I have to go on a loading dose to start (that really messed me up before)? Feel like I'm between a rock and a hard place. I know it's my call but has anyone been in this position?
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JoDogBlue
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Sorry can't make that decision for you. I had no problems with amiodorone apart from after the 3 month course around my second cardioversion my thyroid count was a couple of points higher than it should be but that righted itself within a month or so. I had no skin sensitivity or anything else. As you know you have these side effects then could they not put you on something else?
Me too Des. It was the first drug to put me back into NSR. Made me extremely light sensitive though! I usually get a tan just reading the brochures, so in less than an hour I looked like I'd been to Barbados for a month. Not good for you though, so it's been factor 30+ and floppy hats, even though we've not really had any sun in London this year. I still get the vivid dreams it provokes as well, even though I've been off it since November.
After having spent a good few years on loan service in the Middle East maybe meant the amiodorone had no effect on my skin - though I do miss the tan. For the last couple o years not managed to get a good tan here! Hopefully off to visit my brother in South Africa and my son in Florida later this year so hoping for a top up then.
I’m really sorry to hear you’re still in AF, JoDog. Amiodarone made very little difference for me with regard to success of a CV so it wasn’t even offered when I was given a booster CV following ablation.
It’s beginning to sound like you might need a touchup ablation sometime in the future. I’m not sure why they have kept you waiting for the CV?
I think you may well be right about the outcome. At the pre ablation clinic the nurse said they'd automatically put me on the list for a second ablation as the success rate is around 60%. On the day the consultant said that wasn't the case and the success rate is 80 -90%. Either way I think I may well be on the wrong side of the odds. Perhaps a cardioversion will change that... I won't get a date until the pre admission appointment in 3 weeks and I'm hoping it will be soon after. I'll let them know I'm happy to take a cancellation.
My ablation follow-up is early September which seems a long way off. Daughter's wedding before then and I'm really hoping to feel better for that!
I have no experience of the drug, but would follow medical advice on this. Low doses of amiodarone with monitoring for side effects have been shown to be safe and effective. A quick search on this will reassure you fully.
I think after an ablation the heart is super-sensitive to ectopic beats and extended arrhythmia, and that yours will settle as time goes on, unless it can be shown that the ablation has, for some reason, not stopped the errant conduction around the pulmonary veins. Maybe push for a cardiac MRI in the circumstances to get a proper look at things?
See what your Dr recommends . Perhaps a short course would ease you symptoms. It worked for you before. It is a hard decision - between the devil and the deep blue sea - but I was grateful to be put back into NSR by it as life was becoming miserable after my RF ablation. I was only on it for about 6 weeks but it did the trick and apart from a couple of short blips I have been in NSR for nearly 2 years now. Maybe you might need a second ablation - RF - if the problem isn't coming from the pulmonary veins?
Thanks for your response. I'm hoping it won't be another summer of staying indoors and out of the sun... past experience of even brief exposure with factor 50 made my skin feel like it was burning.
That's awful! I was on it from August to beginning of October but as I have fair skin and am allergic to the sun ( rashes) I have to stay out of the sun anyway! But honestly between being in Afib and having symptoms and having to stay out of the sun for a few weeks ....only you can decide which is the more tolerable. But I think it will help your heart heal if you take it for a short while. My ejection fraction dropped to 28% so the cardiologist pretty much insisted I take it as she said my heart was " getting tired".
I think I would be gently reminding the EP team how you are feeling, asking questions about how to manage your prolonged episode and reminding them you’ll take a cancellation to limit the damage to your chances of success from the ablation, I can’t believe they are making you wait for CV. Keep asking questions and don’t be afraid to be a little bit of a nuisance in a nice way. It’s like replying to a post on here brings it back to people’s attention at the top of the list.
Following is a message I sent to my EP regarding amiodarone. It’s the worst drug I’ve ever been on and I wanted off. The EP took me off it soon after.
The rock and the hard place is that amiodarone did put me back in SR after a failed CV following an ablation. It did its job and I am grateful. But I could not see the reason for staying on it any longer than necessary.
I, unfortunately, reverted to afib just two days ago, 3 months post-ablation. I am now confronted with the same dilemma that confronts you I told my EP that my preference was a CV, but if that didn’t work I would take amiodarone again as a last resort. My EP opted for a CV, which will occur next week (a very short waiting time).
My layperson’s view is that if the ablation did what it was supposed to do—corrected the afib at its source—and my heart is still in the period of “settling down,” a CV is the first go-to to give it the corrective nudge it needs. If I am unable to stay in SR—well, we’ll cross that bridge when we come to it. First a CV.
That’s my take. I wish both of us well
FOLLOWING is the messaging I sent my EP regarding continued use of amiodarone. I understand there are those who tolerate it well. I am not one of those. There was no doubt in my mind about staying on amiodarone longterm That was out of the question. It’s a powerful drug with serious side effects, one that many in cardiology feel should be used only as a last resort (with which I agree).
——————————————
Dear EP Team,
Questions:
It is my understanding that amiodarone reduces my risk of Afib recurrence during the 3-month blanking period but does not statistically reduce my risk of recurrence 6 to 12 months post-ablation. Is that correct?
The vexing question for me is that early recurrence of Afib is associated with later recurrence of Afib post-ablation. But, and here is my vexation, the suppression of Afib recurrence via amiodarone in the blanking period, which theoretically should reduce my risk of recurrence later, actually has no effect on the longer term recurrence of Afib, according to studies I've read.
So basically, we’re keeping my risk of recurrence low for 2-3 months, perhaps longer since it takes weeks or months for my body to rid itself of amiodarone, but in the end that makes no difference in the chances I’ll have a recurrence 6 to 12 months after the ablation. Is that correct?
Amiodarone is, then, basically keeping me from the possible need of a DCCV or chemical cardioversion for three to six months, but after that the amiodarone treatment offers no protection from recurrence longterm. Is that correct?
Chemically staying in rhythm short term does not beget staying in rhythm long term. Is that correct?
If my understandings are correct, I'd like to wean off amiodarone ASAP and trust that the ablation has corrected the source of the Afib, which was the purpose of the ablation. If it hasn’t, short term amiodarone can’t fix that, it would seem to me.
At present, after one month on amiodarone, my resting heart rate is in the mid-40’s. My bpm sometimes gets into the low 50’s during the day. I have rare spikes above that.
Amiodarone is definitely having a negative effect on my quality of life. After 6 months of recurrent tachycardia and now a full month of bradycardia, I begin to wonder if I’ll ever feel good, feel normal again. My spirits are down. My real self, off of drugs, demonstrates optimism, energy, joy, equanimity. I’m losing that self.
Side effects I attribute to amiodarone:
(1) I am, compared to my old self, listless, lethargic, unenthused about much of anything—but I do push through. How long can I keep that up—faking how I feel so that I can participate in normal life activities?
(2) I am also almost constantly dizzy, quite dizzy when I’m moving about but less so if I just sit. That makes me want to just sit. Just sitting is only going to contribute to my decline. My BP this morning is 112/69, which is good I assume, but when I stand up quickly, my head swims. When I was bending over while gardening and then stood up, I felt I came very close to possibly fainting. My head was spinning.
(3) Amiodarone has adverse neurological effects, effects that help a heart stay in rate and rhythm by slowing nerve impulses (is that correct?), but those effects also affect the muscles, cells, organs in all parts of my body, resulting in, I am assuming, a variety of negative side effects. To wit:
a) cognitive impairment: my sharp brain is now dulled, my short term memory impaired to the extent that I can find myself in momentary confusion—a brand new experience for me;
b) motor impairment: an unsteady gait--which is new. I find myself lurching slightly when I walk. I have balance problems—that could risk a fall. My leg muscles are noticeably weaker.
c) my lungs and breathing have been affected. I especially notice when climbing stairs. I get out of breath on metoprolol and amiodarone; I do not when I’m not on drugs.
There’s more, but that sampling of negative side effects is enough.
My concern is quality of life and whether three months of amiodarone is worth it if longterm it’s not going to make any difference in the chances I’ll at a later date revert to Afib, which would in my mind simply mean the ablation was unsuccessful. Amiodarone is not going to be the determining factor in whether or not the ablation proves to be successful. Is that correct?
I know there are more serious side effects, ones that imperial thyroid function, eyesight, neurological systems, etc. My complaints are minor by comparison, but they are not insignificant to me. I would certainly gut my way through the side effects of any drug if my return to good health depended on it. That does not appear to me to be the case with amiodarone. Meantime, it’s making me miserable and I want to stop taking it.
I agree with your observations and reasoning wholeheartedly. If cardioversion while on amiodarone puts me back in a normal rhythm then I want to come off it straight away. If I go back into AF again then it feels like the ablation didn't work. I'll be pretty much 3 months post ablation by the time I get the CV unless I can get a cancellation. I don't want to be on something as unpleasant ( for me) as amiodarone a moment longer than necessary if all its doing is giving a short-term fix and potentially delaying a further ablation if I need one.
You and I are of one mind! And clearly in the same situation. I believe all is going to turn out well. Nothing we’re experiencing is radically out of the ordinary post-ablation. It’s bumpy for lots of us. And then smooths out. Knock on lots of wood!
I should add that the side effects of amiodarone lifted starting two weeks after I stopped it. I began to feel myself again and pulled out of bradycardia. I felt so much better!
Today, having reverted to afib )a momentarily crushing blow that I worked my way past) I have tachycardia steadily in the low 100’s and I feel not bad at all. I know we need to get my heart to slow down, hence the CV, but I don’t feel anywhere nearly as bad as I did when my HR was in the 240’s pre-ablation or when I was on metoprolol, or diltiazem, or especially amiodarone. Sometimes o think the drugs make me feel worse than the afib. It’s a conundrum.
I know what you mean.. I was happy to have an ablation to help to get me off the drugs. At the moment I feel how I did when my permanent AF kicked in after covid, completely wrecked. Guess the road to my goal is a bit twister than I'd imagined.
Yes, yes, yes. Before my first ablation, when I was relatively uneducated about afib, my EP told me the chances of success were 50-50. That did not sink in. I did not expect to be in the wrong 50 percent, the ones needing a second ablation. I had no idea I was headed for six, soon seven, CV’s and a parade of drugs that made me feel like a zombie with the flu.
I feel now, however, that I’m reaching a good place on this weird journey, that the second ablation is going to turn out well in the long run. Even though I reverted to mild tachycardia three months post-ablation, something inside me is telling me I’m okay. I trust that something. When my heart is off, my whole being feels off, physically, emotionally, psychologically. But that’s not happening now. I feel good, tachycardia or no. I believe my heart is healing or I wouldn’t feel this good, this up and optimistic. When my heart feels okay, all of me feels okay. I’m much encouraged. We’re going to be fine.
I'm glad to hear that you're in a good place. I have a new found respect for my heart, I don't think of it as misbehaving just struggling and it's taken a battering. So I'm being extra kind to help it get better; the family think I've lost it!
You certainly have not! TLC is called for, lots of it.
Actually, I think I triggered what I see as a brief and mild relapse back into afib by overdoing exercise and garden work, not paying attention to my body and stopping when I was tired, pushing myself because I was having so much fun being outdoors and getting things done in the garden and yard…on a cold, wet day. That and not napping after a too-short night’s sleep the night before I relapsed.
My heart has suffered a significant invasion and wound. It’s doing its very best to heal. If I just get out of its way and stop asking too much of it, it knows how to heal. You’re right. Our hearts are just struggling to heal. They will. They know how, with a little help along the way.
Been on amiodarone for 6 years now 200 mg a day and other than a scare I had about six months ago which turned out to be not there, have three of the few symptoms of amiodarone which is hand tremors, tiredness and numbness at fingertips and toes. Good Luck to you.
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3 options given by cardiologist
Do I need an ablation?
