AF returning: A Question : I had an... - Atrial Fibrillati...

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AF returning: A Question

watten1 profile image
29 Replies

I had an ablation three months ago. I had a positive meeting with my cardiologist at the beginning of the month who advised amongst other things that I could start to take myself off the two sets of tablets at the 3 month mark. Things have been going well post a difficult period immediately after the procedure. However, over recent days I have been having palpitations and what started to feel like arrhythmia episodes. There is no doubt today, the AF has returned, at least for the time being. I am not minded to take myself off the tablets for now and will wait for advice from the cardiology team.

My question is whether I should now feel that the ablation has failed or can I still hope that this is a late settling down and that all could well still be ok? I know that things still can improve for up to 6 months but this episode this afternoon is the worst I have had since the early weeks. I don't know what has triggered this especially. I had a very stressful episode earlier in the week which might have had an effect. I might also have slightly overdone exercise last week although I was cleared to start it again. It's the uncertainly of this thing which makes it all so difficult so any advice from people who have been through this would be most welcome.

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watten1 profile image
watten1
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29 Replies

Of course it’s more than a bit scary when the ticker plays up after an ablation but try not to worry, the so called three month “blanking period” is not set in stone. It often takes more than 6 months for the dust to settle as mentioned in the factsheet (link below) which I’m sure you will have seen.

api.heartrhythmalliance.org...

In the early days of ablation, first reviews were generally after 3 months but since around 2013, this is often extended to 6 months for the same reasons. I’m not medically trained so cannot comment on medication but I wouldn’t be surprised if your medics suggested that you remained on your medication for a bit longer. If it helps, I was getting the odd hiccup 7/8 months after my second ablation in 2019 but all is well so far 🤞🤞🤞

watten1 profile image
watten1 in reply to

Thank you for your encouraging thoughts. Fingers crossed for your continued recovery.

pottypete1 profile image
pottypete1

Despite having 7 ablations I have continued taking Flecainide. On advice I did stop after one of the ablations but within 3 days was back in AF.

I have now been AF free for over a year and it is marvellous, I just hope it lasts, one thing is for sure I will not stop taking the tablets

Talk to your EP he may well consider you going back on your medication, worth a try in my opinion

Pete

watten1 profile image
watten1 in reply to pottypete1

Thank you Pete. I put a call into my EP on Friday afternoon but don't expect to hear before Monday. I have decided to stay on the tablets until I hear.

mjames1 profile image
mjames1

Catheter ablation is not necessarily pass/fail. When I asked one ep, what were his success rates, he said that if one thirty second episode of afib means "failure", then you have a 60% chance of success. However, what you can expect, is close to a 90% reduction in your afib burden. That was his alternate definition of success.

So, in your case, you are indeed beyond the blanking period (3 months) however, too early to tell if this episode means failure, or simply your afib burden has been reduced to something you are comfortable with.

Personally, If I only had two or three, 1-3 hour afib episodes a year, I would consider my ablation a success.

Jim

MWIC profile image
MWIC in reply to mjames1

wholeheartedly (sorry lol) agree with this - I’m waiting for 1st ablation and if that was my outcome I’d be very happy with that

stoneyrosed profile image
stoneyrosed

Hi, I had a 2 nd ablation last June, all was ok for a while but then I had a couple of episodes that lasted 2-3 hrs in nov and two more episodes in dec. Since then no sustained af just a few second blips. It may well settle down for you but I think ablations can go several ways, it may be that your episodes won’t be as bad as they were before and that you can cope with the blips. Maybe it will settle down and you may have no further episodes or it may have not had the impact you would have hoped for. Therefore a chat with your EP and a discussion about another ablation, a second one is very common and is often more successful. But yes there is a chance that your heart will settle down and I sincerely hope it does.

KiwiBlake profile image
KiwiBlake

Hi Watten

I had my first (and only) cryo balloon ablation last September. Under EP advice I tried dropping the Flecainide (100mg/day) and Diltiazem (120/day) in January (4 months post surgery). I went back into AF 8 days later, felt palpitations, ectopics, weird sensations in the days leading up. Then AF every 2 to 3 days.

Was advised to go back onto the meds. Back on the meds I've had 4 months no AF, so now (8 months post ablation) I'm having another attempt to stop the Flec and Dilt. I've just gone 14 days med free, I've had no AF, no signs, palpitations, ectopics, strange feelings. Feels different this time, and I have my fingers (and toes) crossed that the ablation was a success. For me still early days but I'm feeling good.

I guess what I am saying is don't give up hope. They say it can take up to a year for the heart to fully heal and settle down.

Kia Kaha (stay strong)

Blake

OzRob profile image
OzRob in reply to KiwiBlake

Hi Blake,

As you know I have not had an ablation as yet, booked in for October. Totally AF free whilst on the same meds as you.

I asked my EP about stopping the meds as an experiment to see if the AF was the same as before going on the meds as I have a 24 monitor with 5 months of pre meds data.

He suggested I don't stop the meds for my own curiosity, he did say if I did stop it would take about 10 days for the meds to leave the system fully.

Is that your understanding regarding the meds in your system?

Robert

KiwiBlake profile image
KiwiBlake in reply to OzRob

Hi Robert. I'm trying this second attempt to stop the meds under guidance from the specialist at the local hospital cardiology unit. This however is not the surgeon who was did the initial ablation in Waikato hospital, which is a 6 hour drive away. They do communicate with each other. I have my PIP Flecainide (2x 50mg Flec tablets) at the ready in case I go into AF. The daily Flecainide that I have been on for the last 3 years is a single slow release capsule (100mg) which I normally take in the morning. If I go back into AF then I am to be referred for a touch up RF ablation. If that is the case I'm not worried in the slightest about another procedure, as the first cryo ablation went smoothly. Early days so I'm not celebrating just yet, its only been 14 days, as you say it takes 10 days for the Flec to be completely out of your system.

Good luck with your upcoming procedure in October.

Cheers Blake

mjames1 profile image
mjames1 in reply to OzRob

I asked an ep that same question. He also said don't stop. His opinion was that the more stable I was going into the ablation, the better chance of success. So why experiment the same of curiosity if you have already decided on the ablation?

Jim

OzRob profile image
OzRob in reply to mjames1

Yes, I agree. Although very curious to further my own research.....

mjames1 profile image
mjames1 in reply to KiwiBlake

Blake, good to hear things feel better this time. Please report back to let us know if it held or not without the drugs the second time. Good luck!

Jim

watten1 profile image
watten1 in reply to KiwiBlake

Thank you for your thoughts. A number of us are on a journey, and I am learning about all this as I go along. I found your response and others really helpful as it shows that my experience is not atypical and there are bumps along the way. Best wishes for your continued recovery. My EP was encouraging when I saw her at the beginning of the month so here's hoping.

secondtry profile image
secondtry

I haven't had an ablation but from what I read here it is not uncommon to have to continue with some medication.

Wait a few more months before classifying the ablation as a failure.

Dial the stress and exercise down as far as possible and only rebuild slowly when NSR is prolonged. Also look at other lifestyle choices.

Ppiman profile image
Ppiman

I doubt there was an external trigger. From what I've read, we feel comfort in finding one, but a large study seemed to point to the randomness of AF, rather than it being sparked by ingesting some food or drink. You might have had some increase in inflammation in your body as a response to an allergy or infection, and that might have set it off. I've read that AF seems linked to changes in the natural inflammatory processes in the body causing direct changes to the heart muscle. I suppose an ablation itself might well affect this in which case it could take a long while to settle down and normalise.

I think there's still a strong chance all will be well. I once read a large study where it took up to a year, sometimes more, for the ablation scars to settle down in many of the people studied.

Steve

Rainfern profile image
Rainfern in reply to Ppiman

This is really helpful, I think we are really quick to ascribe various behaviours to our condition and symptoms. I was convinced I must’ve got something wrong when my cardioversion only lasted a week though my EP was very reassuring.

Ppiman profile image
Ppiman in reply to Rainfern

Yes, I agree - spot on.

Steve

Cookie24 profile image
Cookie24 in reply to Ppiman

Do you have a link to the study about the randomness of afib?

Ppiman profile image
Ppiman in reply to Cookie24

Hi - I can't find the study that I was referring to, which was, if I recall done in Scandinavia. It showed that most people weren't able to identify any trigger. I'll keep searching for it as it wasn't long ago when I read it.

I did find this article which also suggests similar:

health.harvard.edu/heart-he...

In my own case, I have no idea whatever what brings on my AF as it's so sporadic, yet when it comes it can occur three times in a fortnight for hours at a time. I've thought about tiredness, but I am almost always tired as I sleep so badly. I've thought about having eaten too much, and so on. In the end, I think it is essentially "random".

Steve

Cookie24 profile image
Cookie24 in reply to Ppiman

Thanks for sending this link. I can't put my finger on any trigger, either.

Ppiman profile image
Ppiman in reply to Cookie24

Thanks. It was an interesting article. I’m still looking for the study on this that I read.

I have an older friend who claims various links between food and his ailments (not his AF, though, which is now permanent). He’ll explain at great length why he can’t eat this it that, yet, when he eats those things unknowingly (cream comes to mind), I’ve more than once found that it has had no effect on him at all.

I think it’s only natural to look to food and drink as triggers for our ills but I have a suspicion that most things are of either an unknown or an internal physical cause (i.e. something that pulls at the heart itself, like digestion, breathing, kneeling, stretching, etc. ).

Steve

kkatz profile image
kkatz

Hi Watten,When you say no doubt AF has returned have you done any tests to confirm? Or are you like me & know what it feels like.

I am 11.5 wks post Ablation.I have had my share of strange going ons & thought oh no it's back & it was different arythmia.I.e. missed beats , premature beats. These were after doing too much . Back to exercise classes, too much bowling but this was all a few weeks ago.Are you still in AFib?You seem to have had a few possible triggers & it could even been the fear of coming off the meds.I don't consider myself an anxious person but the mind makes your body do strange things.

I am due for my review in just over 2 weeks.

I just wonder if I will ever accept it might be fixed.Hope your soon back in NSR & it was a blip.

Kathy

watten1 profile image
watten1 in reply to kkatz

Hi Kathy, thank you for your response. I am not now in AF, I am pleased to say, and have been in NSR since yesterday evening. I did not do any formal tests but my HR was in irregular patterns for hours with the rate fluctuating quite wildly from 133 to 36 bpm across one five minute period just sitting on the sofa. All of a sudden I could feel that I was back in rhythm and my digital wearable device confirmed.

I think I did too much exercise too soon last week and had a few palpitations. I also had a very stressful day on Wednesday. I have rested pretty much since last week but yesterday's experience was different to the palpitations I had experienced. I don't think it was the stress of coming off the meds in my case which triggered things. I was rather looking forward to it but am going to stay on until I get expert advice.

kkatz profile image
kkatz in reply to watten1

Maybe just a blip then.Hope it all stays well.

Witchmama profile image
Witchmama

Glad to hear you are back in NSR. Perhaps your cardiologist can shed further light on what you are to do if this occurs again. You do not want to "wait and see" if the afib just goes away. Sometimes people benefit from adding a beta blocker to their anti-arrhythmic medication to help the heart slow down and get into NSR sooner. Other's have to change their anti-arrhythmic medication to a different one because the body gets used to them. Still, some are on both and need to add a third. Your heart is still in the healing stage and will take the better part of a year for all that healing to take place. Be well and take care. :) Wishing you all the best.

watten1 profile image
watten1 in reply to Witchmama

Thank you Witchmama. When I saw my EP at the beginning of the month she gave me clearance to start cycling again, my exercise of preference. We discussed what I should do if AF came back whilst cycling but not generally. I was to double up my dose of sotalol. When the AF appeared yesterday I initially didn't do anything as I thought it would go away of its own accord. When it didn't I took a double dose as recommended for when it was exercise induced and things eventually calmed down. You are right that I should follow up to ask what to do generally. The trajectory I was on was to come off the tablets completely (including the blood thinner I also take) and to have sotalol to hand as a pill in the pocket. That may still be where I get to but perhaps more slowly than envisaged at the beginning of the month.

I am conscious that the healing process is a long one and I need to be patient. I have been so far but did perhaps go too quickly with my return to cycling last week. I have learned that lesson, regardless of whether it set my AF off yesterday or now. Best wishes to you too.

watten1 profile image
watten1

I would like to thank all of you who responded to my message on Friday. It is very good to know that what I went through does happen to a number of people on the recovery journey. The heart has behaved impeccably since Friday evening and I am hoping it will remain that way for a while. The individual and collective responses really assisted me and I feel a lot calmer and supported. I hope to hear from my EP tomorrow but if I don't I will gently follow up until I do. Thank you all.

BaileyC57 profile image
BaileyC57

Decaf on all your drinks!

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