Following six months in AF and two cardioversions I have spent the last 11 weeks in the fabled domain of NSR, thanks to a daily dose of 2 x 50 mg flecainide. Unfortunately during the last two of these weeks I have had two bouts of AF, about 2 weeks apart one lasting about 10 hours overnight, and one just lasting about 3 hours. Both times I used an extra dose of 200 mg flecainide and this seemed to help me to revert to NSR. Today I am sipping the sweet wine of NSR!
I have now had my follow up with the EP, and we have agreed to try a PiP approach, since I do not get on that well with flec. The alternative suggestion was to go straight for ablation.
I wondered if anybody can share their experience of using PiP? Did it work for you? Did is work for a while, if so how long? Also if anybody can point me to some good literature around ablation and especially the risks, that would be great. I have another follow up in 3 months, to see how the PiP goes, and to discuss ablation if it does not work. I would like to be drug free long term but having somebody poking a hot wire into your heart sounds scary.
Best
KFib
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Kfib
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You can download the ablation booklet, and all our others if you would like, by visiting heartrhythmalliance.org/afa... alternatively, you can email me at r.harris@heartrhythmalliance.org and I can arrange to send it in the post. Regards, Rachel - Patient Services Associate - AF Association
As you probably know, we are not medically trained so we can only draw on our personal experience which of course, may not be suitable for others for a variety of different reasons, not least, we are all different. In my case, I stayed in NSR for around a year after my one and only CV. When I slipped back into AF, I was prescribed Flecainide as a PiP and it worked successfully, but the episodes started to become more frequent, so I followed my doctors advise and was put on a waiting list for an ablation. I then took 2 x 50 mg Flecainide per day as a maintenance dose and remained in rhythm right up to having the ablation which was around 15 months ago. For me, it was the right way to go, but I believe you need to seek advice from the medics to satisfy yourself of the best route forward. Just bear in mind, for many, but not all, AF can be a progressive condition, but also many manage to live normal lives using medication to control their symptoms. Never an easy decision to make, but as others have said......research is important, hope this helps, John
Speaking purely personally, I would (and have) gone for the ablation route. I am back on drugs after many years free of AF following an ablation, and although they're working and I can't imagine life without them, I'd still rather not take drugs long term. And AF is supposed to only get worse, so best nip it in the bud.
But most importantly though, if I were you, and I'm not of course, I'd be going with my EP's advice.
If you want to have info of people's experience put into search 'Ablation' and you will see loads.
Male or female is of no relevance, age maybe but most relevant is the time you have been on AF as the earlier in the process you have Ablation the higher the chance of being AF free BUT it is SO individual so generalisations are no predictors of how you will be.
I was 62 for 1st - had 8-9 years of AF, did all the drugs then couldn't , 1st ablation made things worse, 2nd worked & had nearly 3 years of AF free & no drugs.
AF back now but not as symptomatic but affects another condition so incapacitates me. I can no longer have any drugs so probably pace & ablate is my next step but as that is SO radical I haven't been that keen.
My only regret is I didn't have ablation with AF onset - but is was never offered so I learned about options through this forum.
What exactly are your expectations of ablation? If you ask more specific questions it may help?
I have read quite a few personal stories of the ablation process on this forum. You are right they are highly individual and rather varied.
I suppose I would like to access some hard numbers:
What proportion of people undergoing ablation, in similar circumstances remain AF free for say 5 years.
After ablation what is the likelihood of being able to be free from antiarhythmic drugs, and how many need to carry on. Of those that carry on how long is this for.
What are the chances of the various complications.
Then there are questions about the post-op recovery:
It is here there seem to be wild variations, and there seems to be quite a large disparity between the personal accounts I read here, which suggest quite extended recovery, and official figures. Especially when you measure full recovery as "going back to what I was doing before" rather than "able to do some everyday tasks". I see two weeks quoted officially in various literature, but the personal accounts suggest rather longer.
Finally, there is the question about pre and post-op vitality and heart function. Whilst ablation may rid one of AF are there any other consequences for the heart and health in general? Presumably, heating the atrial to produce scar tissue could reduce heart function?
I have found various leaflets including the AFA one to be quite helpful in answering these questions, although there seems to be some variation in the figures you get depending on who you ask.
So if anyone has already carried out these searches and found the authoritative data, then I would love to hear about it.
I have no specific expectations of ablation, much in part because of stories such as yours, respectfully.
Three years in my opinion, as pertaining to me, not advocating or asserting anything for anyone else, is not acceptable.
As for gender, it has hormonal consequences attached to the variable of gender. If you are willing, please unpack this a bit more.
At 62 you cite your onset as 8-9 years that you know of, and as with many of us we are unaware, so you very well may have had AF, even if just expressing as paroxysmal, prior? As applied to a female, that would have substantial impacts on AF if menopause was occurring at 62 less 9 or more.
Again, respectfully, but citing your AF as back, but not as symptomatic, is like being a little bit pregnant. Out of rhythm is out of rhythm and as we are told a greater risk of pitching a clot.
Please share:
During those 3 years how often did you check to see if you were sustaining NSR?
Was it always something in the back of your mind that kept you having to check your pulse or do whatever you do to ensure NSR, post ablation?
Also, people in persistent AF supposedly are down 20% in overall cardiac capacity as a general citation. When in NSR for the 3 years did you notice increased physical ability, endurance, not get winded as fast, etc? What was the sum of NSR on your overall feeling of wellness?
My case is very complex as so many other issues involved:-
- Diagnosed with sleep apnea - now use CPAP - BIG link to AF
- I have autoimmune/autonomic dysfunction - chicken & egg as to which came first with AF
- Diagnosed with Myasthenia gravis after I failed to recover after 2nd ablation so put all heart drugs stopped immediately - less than 4 weeks after ablation - Flecainide/Bisoprolol on diagnosis as contraindicated for Mg - this lessens the efficacy of the ablation as I was still getting ectopics and tachycardia.
- You will both have to read all the studies etc for yourselves - there are plenty on sites such as WebMed - but you will have to register to access.
- Statistics are just that - based on herd numbers - and techniques, equipment and expertise is changing all of the time and the studies rarely keep up with those changes.
All treatment carries risk but for me it must have a benefit.
When I was first diagnosed with Mg I couldn't have coped with AF as well.
My EP asked me to monitor myself re ECG, BP & HR - I do that in NSR no more than once a week - I am very body aware - I know immediately when something is out so I don't ever get hung up on numbers except when exercising as I found out that I personally cannot go above 120 without consequences, sometimes serious.
I cannot answer question regarding SOB, fatigue etc because I didn't recover from the 2nd ablation - because of the Mg (which is exacerbated by drugs & some invasive procedure - just thankful I didn't have a GA because I probably wouldn't be here).
Before AF I was very fit, I sailed competitively in dinghies, I swam, I dived, I cycled (a bit), I walked, I did Yoga & Pilates. I cannot do most of those things now but it wasn't the AF which is the problem - I was never in persistent AF anyway - I was never going to leave it that long so it became persistent.
In my view ablation is a lot less risk than being on very toxic drugs for life with horrendous side effects - period.
Treatment for AF is for QOL - only you can decide what is best for you based on what is offered, what risks pertain, what benefits may be gained. I felt the benefits were way ahead of the risks and I read nearly every study on the Web and the stats and the number didn't help me one bit in making up my mind.
PIP - Flec - worked for me for a short while but there is a phrase - AF begets AF. The more episodes you have - the more likely you are to have more, and more.
Nutrition is incredibly important and research is only just beginning to show how essential - I work with a nutritionist with my EP & neuro - both are on side and very supportive of me.
IT IS INDIVIDUAL and very complex so bit like comparing apples and oranges.
Although a pacemaker is drastic my dad has had one for 20 years. He is now 89🌝 We would not have got those extra years with him without pm. His is slowly becoming less able to fix things but what a life he has had with it. So listen to the experts. You may get many more good years if you get a pmaker. All depends on how much damage your heart has sustained. Good luck with you decision either way.
I can't type a long story as I'm on holiday in Canada. But in short, I'm male, 67, ablation done 13 years ago. I had totally debilitating AF which had slowly developed then accelerated into 24/7. My ablation took away all symptoms for 8 years. Then a teeny weeny bit of AF came back. Had another ablation to nip it in the bud, my EPs words, but they couldn't ablate for reasons I won't go into. So back on drugs now for the past few years and coping well.
But as i know how my AF was developing, i feel certain that without the ablation the drugs i am on now would not work. So my ablation, i think, is still working. That's a personal theory but i feel sure it is true in my case.
Yes, we are all different. I couldn't tolerate the meds and PIP flecainide simply didn't work! Plus I was hugely put off when I read the Patient Information Leaflet.
So ablation was the only route for me. I had the first to cure the SVT and then the second and third were for the AFib, which went from 35 hours whilst wearing a 7 day holter to persistant during the early part of this year.. I am now almost 3 months post ablation and so far AFib free and only taking Apixiban to reduce my chance of a stroke.
Kfib, I was diagnosed with paroxsymal AFib in 2005, aged 45 (at the time I was physically extremely fit, slim but drank excessivley). Given my afib was paroxsymal I tried PiP approach. It didn't work. I took 2 x 50g flecainide for 10 years and only went into Afib when I forgot to take the flecainide. Then the flecainide stopped working and the attacks of Afib became longer and longer (48 hours) so I had an ablation at Papworth.
The process itself lasted a couple of hours and I kept falling asleep during it. There was no pain as I was heavily sedated on fentanyl. During the process my heart went into Afib (this is to be expected becuase of the agitation in the atria; in fact it is necessary for the surgeon to able to see where to ablate). For two weeks after I suffered from daily side effects of fairly severe headaches and dizzy spells. Things gradually got better.
Three months after the procedure I suffered two attacks of atrial flutter (apparently this flutter/ fibrillation experience is not uncommon). I was prescribes bisoplrolol. I took this for five months without problems but then I started to suffer from low blood pressue. I stopped taking the bisoprolol and I have been fine for 4 months. So, in summary since my abaltion 15 months ago my heart has been in NSR (except for the two attacks of flutter) and for the last 4 months I have ben in NSR drug free.
I consider my ablation a great success. I hope this helps.
jondeanp how long were you diagnosed with AF and was it persistent or paroxysmal? You did nothing different and reverted? No change in diet, supplements, environment, etc? Nothing you can identify that may have influenced reverting.
tombeaux i was diagnosed with AF in 2013. I had a lot of stresses in my life (work and new child).
My AF experiences have always been persistent. I was DC cardioverted 5 months later.
I had another AF occurrence 2 years later. I was cardioverted with flecainide this time, but I only stayed in NSR for 3 months.
The EP put me on the ablation wait list. Still in AF, i reverted naturally 7 months later. It actually happened whilst i was cashing in my winning chips at a casino on the last day of a Caribbean cruise. A bit of adrenaline helped i think.
I am doing HIIT sessions at home for exercise. The main dietary change i've consciously done is to avoid caffeine.
Fortunately for me i do not experience any major issues when in AF, apart from being unable to perform any high intensity/ aerobic exercise
My only medication at the mo' is 2.5mg of bisoprolol
Pills did not work for me at all. They ruined my quality of life and I could not function. I am so grateful for the ablation. If I need another I would go back in a second and without fear. I think having the right EP with lots of experience is key. The process was not painful at all and it took me a week in bed being tired to recover.
Hi , I've had very similar worries about the impact on the heart of scarring it.....but when I have queried this with the EP I am assured that I have nothing to worry about. My PAF came on very very quickly from an extra heart beat every couple of months to 24 hr AF episodes. I don't want to be on tablets that make me feel Ill or risk having a stroke as I'm already genetically highr risk for a heart attack so didn't want anything else to worry about with my heart so opted for the ablation....I had just gone 52; I had the ablation 3 months after diagnosis and I am only 8weeks post op. I see my EP next week ....I'm feeling very positive about the whole thing. It is a very personal journey.
What does PIP stand for/mean? I had first documented Afib 9 months ago, with two hospital visits and a handful of self resolved episodes and then a 3rd hospitalization for a-flutter which after 4 days had the cardioversion. I was on 100 flec 2x day. I just had my ablation (cryoballoon for afib and radio for aflutter?) on 8/16 and the doc immediately took me off from flec, but is keeping me on thinners at least for 3 months and will evaluate at that time if i can come off from the thinners. I am also still on 180 Diltiazem ER 2x day and believe i may always be on some sort of bp med, as i have had high bp for several years. I am 48yr old female, my father had 2 TIA's in his late 40's and was officially DX afib in his early 50's. My father's mother died at age 52 "from ongoing cardiac issue"..... we will never know, but i suspect she easily couldve had A-fib. One of my two sisters has AVNRT and is controlled by betablocker for several years now, so has not opted for ablation for that issue, but since its not afib, she also does not require thinners.
Had a cryo ablation yesterday and apart from feeling as if I've been kicked by a small donkey apparently everything went well. Now just have a wait a couple of months to see if it's worked so I can come off drugs. I was like many people on this blog - started AF, kept in check by drugs which gradually stopped working, went onto Flecanide which certainly does the trick and quickly (!) but recommended by my consultant for ablation. I tend to go with what the experts say. Just hoping that this ablation works well for me as the drugs can have long term effects.
Hi Ally, thanks for your reply. I hope your recovery goes well. A small donkey kick doesn't sound too bad? Some on here were kicked by horses! Good luck.
Living with AF isn't easy. Most of my reading I have googled and it is pretty spot on. My cardio and cardiac surgeon for the ablation were both very informative. I never felt pushed into it. With my ablation everyone kept saying quality of life. My ablation fixed my flutter but to fix AF is a much more serious one. So now I've had the flutter fixed I do feel better and the drugs help the AF. I have cut back on real strenuous exercise just walk swim and gentle gym. So what I'm saying is will the op improve quality of lif?. It did for me. Way up the pros and cons and then if it means you get some of your life bacK DO IT!!! The risk you take may be the best thing you ever did. It was for me. Now when I may need the big AF ablation I won't hesitate. Hope this helps.
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