Well, after my third ablation on 6th July, my heart went back into AF yesterday evening. I've taken extra Flecainide hoping it would help revert it but had no luck. Am totally gutted! Will ring the nurse at the hospital where I had my ablation tomorrow for advice.
Jean
Oh Jean, I share your utter disappointment.They must be keeping a close watch on you so hope that maybe this can be expected at this early date . Nevertheless I understand how you must feel.
Hope you have something more positive to post .... perhaps tomorrow ?
Sandra
Thank you Sandra. The EP isn't keeping a close watch on me at all! I don't have an appointment to go back for a check up, if I have any problems I have to go through my GP. I only saw my EP for a few minutes before my ablation and right afterwards, other than that I haven't seen him for years.
Yes will wait and see what nurse says tomorrow. I live in hope.
Jean
Oh no! But don't be too dismayed. This can happen and then it can settle down. It takes months before the full effect of the ablation is evident. Give it time.
I really don't think its going to settle as it's exactly as it was before my ablation, but I live in hope.
Jean
Well, see what they have to say tomorrow. I rang the nurse a few days of AF after my ablation and, as if by magic, it went away for a couple of months which was very welcome.
I understand your concern but this is very early days yet. This is not uncommon and thing may well improve as you heal. Another three months and then you might worry.
I don't want to be a defeatist, but it's exactly as it was before my ablation. If it had only lasted a few hours I might have agreed, but it's now been one whole day. Before my ablation my heart was racing constantly for 4 plus months. I've taken extra doses of flecainide with no result. Will see what tomorrow brings.
Jean,I am saying what the others are saying ....Looking back at my post two years ago it took twelve months to get over the Ablation and twice had to take Flec and Bisoprolol to abort AF episodes....So don't give up on it yet.Cx
I think I need a cardioversion, but we have to wait ages for that in the area where I live. My heart raced right after my ablation and I was cardioverted and the next day I managed to slow it with Flecainide. I know its daft but I'm convinced it was eating cake that started it off yesterday evening. Whenever I eat cake, which is rarely, I feel my heart protest. I overdid cakes yesterday. Have gone gluten free again and never know what to snack on other than nuts. Then at the supermarket I saw gluten free coconut pyramids!
Jean
Jean,
Yes possibly food intolerance...
I hadn't drunk alcohol following my Ablation nearly two years ago as I know full well it's my trigger but I tried a glutton free beer recently without any adverse reaction...
Greedily ate half a bar of Cadburys fruit and nut the other night and could feel the ectopics...
I have a long history of food intolerance/Allergies usually have will power but hey ho l am only human after all...
Hopefully when glutton has passed through you digestive system ( 3 days) your heart will settle down.Fingers crossed.
Carol.
I certainly hope it will settle. Was going to ring my AF nurse today, but thought I'd wait a little longer.
Jean
Yes, I think sugar and gluten have an involvement either directly or indirectly as the 'pleasure surge' (if you are like me with a very sweet tooth) via the brain affects the Vagus Nerve, which in turn affects the heart. All these lifestyle moves take time and I am slowly weaning myself off the sweetest cakes. Best wishes.
You know, two days after my cardioversion I ate cake at a picnic and within a short time my heart was racing. This time it was after eating coconut pyramids, 4 in total I'm ashamed to say but they were a bit biscuit like and I ate them after lunch and dinner. I've truly learnt my lesson.
Jean
if there was any mascarpone cheese in the cake (icing) brings it on with me.
So disappointing for you but you had to give it a go. Keeping fingers and toes crossed that it will improve as others suggested so don't give up on the hope just yet - deep breaths........
Ok, will heed your advice. I was so happy before my heart took off again, was thinking I was cured and planning the walks I was going to do! Oh well, I'll live in hope.
Jean
Oh flipping heck, how disappointing for you Jean. I really really hope you get back into nsr soon. Fingers and toes crossed...Hugs.xx
Damn 
Sorry to hear this!
Gosh I could say something stronger than damn! At times I feel like screaming.
Jean
I f-bombed at work when it went bad again on Saturday. And I don't do that a lot anyway - and never in uniform!
It is , as everyone says, very early days but still I totally get your disappointment. It is all such an emotional rollercoaster isnt it. My very best wishes are sent your way x
Thank you, yes it certainly is a roller coaster. We all live with such hope of being normal again.
Jean
Jean, Believe me, I totally understand that frustration. The same thing happened to me after my ablation last year. I think it helps to picture WHY it has happened. Your heart has had a terrible assault, either by fire or ice, depending on the type of ablation. There have been many areas burned and so your heart is angry and has so much healing to do without being able to sooth it with a cream, or even a bandage. So while it heals, the scar tissue forms to keep the wild electrical impulses from jumping where they don't belong. But until then, it is so easy to understand why this happens. I had two solid weeks of AF after my ablation last year. I had a cardioversion, and the right meds on board, and it has been smooth sailing since then. I had a big surgery 6 weeks after my ablation, to remove a parathyroid gland and that incision on the outside was the perfect reminder of how long it was taking my heart to heal on the inside where I could not see it. I wonder why EP's do not explain the 3-6 month blanking period post ablation where this is common. It would save everyone a lot of stress. Please take some deep breaths, and think positive thoughts. Heal gently. .....and patiently. xo
Thank you. If I could have a cardioversion right away I think there would be some hope that my heart could right itself, but I usually have to wait 6-12 weeks for one. My heart rate is exactly as it was before my ablation and I'm going into my third day of my heart rate being 20- 40 beats higher than normal. I will ring my AF nurse this morning and see what she advises. By the way, I've discovered that deep breathing makes my BP plummet and my pulse go higher. Wish I was normal, as I hear it helps other people! Jean
Hang in there Jean and don't give up...........my ticker played up for 12 hours a week after my ablation, but so far so good.......hope you get the help you need from the nurse, John
Hi John - My hearts been racing for two days constantly now! Don't worry,I never give up. I haven't rang the nurse yet, thought I'd better give my heart a little more time to calm down.
Jean
Jean, so sorry to hear about this. As everyone says, it is early days. If your not getting the support you need then maybe find another EP. I had two ablations (groin entry) that didn't work. I was lucky enough to be able to get a transthoracic (no not transsternal) ablation done last November. After some early hiccups and have been fine since (fingers crossed for the future). I think they call cases like me 'lone source' AT where the source is on the back wall. You would need a referral to a cardiothoracic surgeon who does this. Would need to go through your EP. Good luck.
That's interesting. Thanks for letting me know and I hope you continue to be well.
I really feel for you Ive have had 5 or 6 ablations plus many cardioversions but last year after 6 weeks in hospital(I have other heart issues too) they had to put a pacemaker in & ablate my av node they didnt want to due to my age Im 56 but there was no choice.I do hope you get sorted its so awful living with AF & other arrythmias x
Goodness you have had quite a few ablations - has the pacemaker and ablation worked?
Thank you. Do you feel better after having a pacemaker fitted?
Jean
Hi. It can sometimes happen that way. It may take a few weeks before it settles down in sinus rhythm. Hope it works for you
Thank you.
So sorry to hear this Jean. I had my second one mid May and have recently had two episodes. Fortunately for me Flecainide put me in NSR, but I completely understand your concern. I'm at the hospital today, but as part of a trial I am on and even though the trial is AF related the trial Doctor, will only advise me to wait until my check up.
It's a sinking feeling going back into AF and I sincerely hope with it being only a handful of days things settle down for you. Good luck with speaking to the hospital.
Hi Jason - Did you take Flecainide as a pill in the pocket before your ablation? I take it all the time and I'm wondering if the body builds up a resistance to it. Did take it as a PIP until about 8 months ago, but found I was needing to take it more and more often as attacks became more frequent.
Jean
I used to take 100mg twice daily and had done since April 2014. I stopped taking Flec 1st July this year after cutting down to 50 mg twice a day. The two episodes I've had responded to 200MG pill in the pocket. I think it may have been Bob in the past that has posted the drugs don't stop working, it's just the AF gets progressively worse, but you've not long since had your ablation. I did have quite a few runs of AF not long after my ablation, but it settled down. My worry is my EP on several occasions has said they have a blanking period of two months and anything after that, the ablation is considered "Probably unsuccessful". Time will tell
You took 2 x 100mg = 200mg in one go? Not that I'm going to do that, just interested.
Jean
I did Jean. I wouldn't advise you to take anything without consulting the hospital, however in the past one 100MG didn't do anything for me. 2 x 100MG PiP put me in NSR within the hour. My EP is aware of this. As we hear so often on this site, we are all different.
Thinking of you and hope it is just a settling down"blip" ....
Sarah
Thank you.
Hi I had two of the same they decided not to do any more and I have been on warfarin now for years not nice side effects not good readings but it is doing the trick at moment
Are you on warfarin although I do exept every one is different
Wouldn't it be nice to be normal out if pain etc just for a few weeks
Have been fighting problems for 55 years showing my age lol but I will keep on fighting and hope a lot if people out there with problems will try to do the same
It's hard I know but we can always hide away and have a toot occasionally 😂😂😂
Hi Rusty8 - Yes, I've been on warfarin for a long time. Oh to be normal, but I live in hope!
Jean
No experience of ablation, just sorry to hear you're in the wars a bit and even more sorry about waiting time for cardioversion. Round here the nurses do them and the waiting time is very short. probably want a doc though with someone as interesting as you!
Thank you. Nurses do cardioversions here too, but we have a general anaesthetic so of course need an anaesthetist also. I was once offered one in A+E without any anaesthetic, but reverted to sinus rhythm before they could do it. I think it was with the fear of having it done!
Jean
I have to have a general anaesthetic to get into clinic (!) well you know what I mean. GA every time for me ( though I've only needed one so far. Can't understand this post code lottery for want of a different word.
Yes, it's certainly about time we were all treated in the same better way.
That's a disappointment, Jean but I hope it is as other ablatees have said, early days. Very best wishes for recovery and the hope to walk your costal path again. xx
Thank you. Yes, I'm hoping it's just a blip. I sometimes wonder whether Flecainide keeps my heart at an abnormal rate, or is it helping to keep it down. Who knows. I could drive myself mad thinking about it, so I try not to. There are so many ifs and buts with this horrible condition. My daughter laughs at me when I tell her the latest thing I blame for making giving me an AF attack. Ha, she'll laugh on the other side of her face one day! That expression doesn't sound right, but I think it is. See this condition is driving me quite mad!! I'm normally (cough) such a level headed (cough) person.
Jean
Hi Jean, a few months ago a GP upped my Flecainide from 50mg twice a day, to 100mg twice a day. Took me a few days to realise that it was the increased dose that was making me worse, that and the excruciating headaches. Took it back down to 50mg and felt much better. My EP said the Dr was wrong to increase it. Hope you get yourself sorted out soon. Take care.
So sorry to hear this Jean, to echo everyone else it's early days but I would ring the nurse now and not wait. Maybe just the ringing will put it right! Best wishes
Brenda🐝
Thank you Brenda. I don't think this extremely hot weather is helping either. How are you now?
Jean
Hello Jean
I fully understand how low you must feel. I think that all of us that have had ablations hoped immediately it was all over we would be free of this soul destroying condition.
However, I would agree with others who say it is early days for you.
As you may remember from my recent posts I am lined up for my 5th ablation 4 weeks from tomorrow. Of my previous 4 ablations, after the first two I had it all settled down quite well but sadly my PAF returned a few weeks later hence further ablations.
On the 3rd ablation I had it done on a Friday and on Saturday morning (still in hospital) I went back into AF. I was given extra flecainide and ultimately my normal pattern (in and out) returned.
After my ablation last November I went back into AF after 2 days and it lasted for about 10 days. I contacted the rhythm nurses ( not sure whether it was Reggie or Bossa Nova) and was told that it was not unusual for AF to still be around for up to 3 months. They contacted the consultant who sent me a message that if it was still in AF after a couple of weeks he would cardiovert me. I had a date set but my heart went back into NSR all on its own. I then reverted to my normal weeks in and hours/days out PAF.
Despite your despair (I know I have been there more times than I care to mention) I think a course of positive thinking and as 'Grandma' advises deep breaths is in order.
Remember what Bob said recently that all the successful AF sufferers do not hang around this community for long and that 80% of ablations are successful first time with the remainder having progressively increased chances of an AF free life with each further ablation.
I found that calling the rhythm nurses was of value, do not hesitate that is what they are there for. Also if you stay in AF for a period of time and you do not feel that a cardioversion is being offered quickly enough go to A&E(ER). In my experience they do take you seriously and as you are there and not just on a phone they tend to take matters seriously for you.
I hope things improve soon for you.
Thank you Pete - Crumbs, lined up for fifth ablation! You must really know the ropes! At times I feel quite angry that my AF is back, but you know that feeling gives me a great strength. I'm not one to feel anxious or stressed and fortunately have a very positive outlook (inherited from my dad).
Unfortunately, deep breathing makes my BP go very low and my pulse go high. I don't remember it doing that when I first had AF eleven years ago and sometimes wonder if its only since taking Flecainide that this has happened.
Jean
Hi sorry to hear of your most recent experience. I can empathise as I too had my third ablation for permanent A F on 4thApril this year at Barts! Whilst I departed in NSR it lasted shorter than did the bruising! Whilst I would'nt suggest the procedure has been painful to endure I do believe there is a strong possibility of longer term damage and because of this I, when I see my Consultant later this month, I shall engage in the merits or otherwise of a Pacemaker. Like you I knew that once again the AF had returned and share your deep dissapointment. When back in normal rhythm you have a wonderful feeling that your life has been handed back to you and then BANG back to the new normal! If in reading someone out there has trodden a similar path I.E Pacemaker after failed Ablations iwould be very keen to hear from you. Meanwhile Jeanjeannie I so hope that Ablation has worked and that as far as you are concerned the next 8 weeks sees your condition improve substantially.
I too would be keen to hear about anyone's experience re having a pacemaker after failed ablations, so will be following this post with interest.
Over a year now since my third ablation and still getting AF about once a month which can last up to 36 hours at a time, eventually going back into normal sinus via Bisoprolol and Flecainide combi, but not before plans with others are scuppered at the last minute and 2-3 days recovery (my husband relates it to doing a marathon for that long, have never done one but can see what he means).
Well-meaning friends advise they know someone who had a pacemaker fitted and it worked for them so it should work for me, but am reluctant to go that route just yet and my EP hasn't mentioned it yet.
mrsg46
The burning question here is - what are you expecting from the pacemaker?
A few years ago when I had Paroxysmal AF, whenever I came out of it back into sinus, my heart would stop beating for 2 or 3 seconds, causing me to lose conciousness. After I had sustained several injuries through falls, they decided that a pacemaker was the answer, and it certainly was. When my heart stopped for those few seconds, the PM took over, creating the missing beats. However - the PM can do nothing at all to help AF. It will be set by the technician to work at a pre arranged number of BPM and will take over if the natural heart rate falls below the set level. That, in a nutshell, is all it can physically do. It can provide some information as to how the heart has been behaving, but that`s about it.
Thank you, I can see that you truly understand what its like. I sometimes remind myself that there are far worse thing we could have. I hope that all goes well when you see your consultant and make sure you let us know what he suggests.
Jean
I would imagine that much of your bad feelings with AF stem from the worry and anxiety that you get just by having it and the fact that it`s not going away. You could try a different approach. Firstly, keep in mind that AF isn`t going to kill you off or cause you any serious harm, as long as it`s properly controlled. Are you on beta blockers? You need to be in order to bring your heart rate down. After a while, the AF should settle down as your body becomes accustomed to it. It may take weeks to really settle down, but I`m sure you would notice a difference.
I am in 24/7 permanent AF and have been for 3 years now. I take 5mg bisoprolol, which keeps my resting H/R at 60, and an anticoagulant (acenocoumarol), and that`s all. I can honestly say that at 77, I have a virtually normal lifestyle.
When I had paroxysmal AF, between bouts I used to get atrial flutter which was very debilitating. I had 3 ablations to stop this, but nothing worked. I was also plagued with ectopics that used to keep me awake at night for much of the time. Whenever I went into AF - no more flutter, no more ectopics! When my AF became persistent, I chose not to take any action to get it cured, which was the best decision I could have made.
After a recent echo scan, my cardiologist has said that my heart is generally in excellent shape. My body has adapted itself to my being in AF, and I really do feel fine.
If your AF stops, don`t worry about it starting up again. If it does, just try to relax and accept it. Just relax and it should settle down. But don`t forget your beta blockers. If you`re not on them, see your GP pronto!
Good luck.
Hi Wilen
I like your attitude towards this beastly condition. Relaxing and accepting. I am sure that helps.
Unfortunately I am not a good candidate for rate reducing medication as my resting hr is already low. Right now it is 62 but often lower.
I am paf on Apixoban with my last episode being in early May. Guess I have to find a way naturally to bring the heart rate down during future episodes.. Any tips?
All the best
Julia
Hi Julia.
When I had PAF, I only took beta blockers when I had a bout of AF, stopping them immediately I reverted to sinus. I too had bradycardia, with a resting rate as low as 40 when I was completely relaxed. Your apixaban is only a type of anticoagulant, not a betablocker. I think you really should be on a betablocker when you`re in AF, unless there`s a valid medical reason against it. If you can bring your AF rate down, you may feel a whole lot better. What is your heart rate when in AF? If it`s higher than 100, then I rest my case. You should have a chat with your GP. I passionately believe that proper management of AF is critical, and can make a huge difference to how we feel when we have it.
Keep us posted.
wilen
You imagine wrong Wilen. I've had AF now for 11 years and as well as 3 ablations I've had numerous cardioversions. I'm not a worried or stressed person, sometimes I think I'm too much the other way. I have been on warfarin for many years now. My AF when I get it is debilitating and I can only walk short distances. My last really bad bout of AF was last September when I had to fight to keep conscious.
I used to swim and train twice a week, do cross country running, long distance walks and cycle.
I helped run a nursing home and have seen what a stroke can do to people, the worst scenario being not to be able to eat (fed through a tube in the stomach), unable to move or speak (now that does scare me). A bit like a living death! So I think I know all there is to know about AF. You are lucky that your body has adjusted to AF, I wish mine would. My bouts were sporadic and I certainly knew when I was having an attack, but since last February became permanent. Like you my heart is generally in good shape.
What I have learnt about AF is that we all, on this forum, get it in varying degrees.
Jean
Hi, just wanted to say I feel your frustration -- AF is one of the most frustrating conditions in the world, it's like that crazy relative who shows up at the Christmas party and starts ruining everything. That being said, I think you should be as proactive as you like in calling the nurse. People with AF are often treated like we are imagining things etc but we know our bodies and we know when something is messed up. It is so frustrating that your area has long waiting lists, etc., but I think the 'squeaky wheel gets the grease' so don't hesitate to call your nurse. And if they ever complain, point out it's a lot better to do preventive care than deal with the effects of long-term uncontrolled AF. Let us know how you get on!
Thank you. I know what you mean about the 'squeaky wheel', be assured I will never suffer in silence. I've held off calling my AF nurse as lots of experienced people on this site have said it's normal to have episodes of AF/heart racing after an ablation and I've certainly had them after all three of my ablations. Will give it another day or so then call her. Will certainly let everyone know how I get on.
Jean
What's funny is that the morning after I wrote this I had my first afib attack in 4 years (and only my 2nd ever). And while in hospital (I just got out) I was comforted by thoughts of your story and everyone else and I didn't feel nearly so alone. But it was funny that I had just been on the site!
Sorry to hear that.
It's strange how things happen. Just about every time I'm due to see my EP I'll be feeling really well and if I have a heart monitor on I'll be so well, the week I have it, that I could climb mountains! It does make me wonder how much effect our minds have on AF.
Jean
Its the coconut JeanJeanie check it out with the word arrhythmia and see what you come up with
Ultramarine, who has had to go on a modified fodmap diet with no MSG 621 or 450 and definitely no coconut.
That's interesting and I will certainly look it up on the internet. I'd been gargling with coconut oil too. Thank you for letting me know.
Jean
Really sorry to hear it's back! I hope you get to see the EP quickly and also that things improve as your heart heals. As Bob wisely says, it's early days. Just steer clear of those cakes...
Thank you. I have learnt not to eat cakes, but went gluten free again recently and what did I see on the shelf, but gluten free cakes! Some people never learn - me!
And me 
Jean, I am sorry but don't despair. In most cases it is normal to get Atrial Fibrillation after an Ablation. They may get less and totally disappear after three months.
stopafib.org/newsitem.cfm/N...
According to stopafib.org
"Early recurrence occurs within three months of catheter ablation and is related to tissue inflammation that arises from ablation. If atrial fibrillation returns during this period, it usually subsides after the tissue has healed."
"If afib recurs during the three to 12 months after ablation, it is characterized as late recurrence. Late recurrence is not uncommon following pulmonary vein isolation, which is the cornerstone of catheter ablation. Pulmonary vein isolation entails creating scars on atrial tissue (“lesion lines”) that will prevent abnormal heart rhythms from circulating in the heart. Even though doctors confirm that electrical conduction has been blocked during the procedure, the pulmonary veins can “re-connect” in the three to 12 months after catheter ablation. In fact, about 30% of patients undergo a repeat procedure within the first year.
Results from the studies presented by Dr. Wilber suggest that reconnection of the pulmonary veins is not the sole reason for very late recurrence.
Factors Associated with Very Late Recurrence" --- continue on link given above.
Hope this helps and your condition will resolve itself this time.
Heather
Hi Heather - Thank you for that info. Its difficult to believe that it may go as my heart heals, as it didn't after my last two ablations. Have just come back from my doctors surgery where I had an ECG. Nurse said there that my heart is constantly bouncing around between 105-117. ECG has been emailed to my EP, so I'm hoping someone from the hospital will call me.
Jean
Jean
Trying to chear you up a bit!!! I know it must be really frustrating and disappointing.
I would be very happy if my HR was bouncing around luke that with a range of 12 beats. When I take mine far greater. Last night range was 55 to 97 (range 42) averaging at 79 and this morning 62 to 97 (range 35) averaging 87.
Hi Jean, I am sorry. Can you contact arrhythmia nurses at the hospital and talk to them? If your heart rate goes any higher then I would go to A & E. That is what had been suggested to me when I went into AFib after my Atrial Flutter ablation. I had another AFib episode this morning but the Bisoprolol kept the rate down below 100 bpm. I am going to have another Ablation but for Afib this time. Probably a 1 year wait. Since the last Ablation I have continued to keep my weight down and started doing 20 to 30 minute walks. Whether you can do this too, I obviously don't know, but it may help if you are not already also doing so. In my case, I think it has minimised the symptoms somewhat but still causes anxiety. So I can feel for you.
To overcome my anxiety at night I do a couple of Mindfulness exercises from a CD which comes from a Book written by Mark Williams and Danny Penman. Hopefully, your heart will settle enough for you to have some rest.
The time before, I took a Diazepam tablet to take the edge off. This was done with the consent of my GP and Arrhythmia nurse. Maybe it will help you but, of course, consult your GP.
All the best
Heather
Jean. Just had a thought. It would be better to contact them sooner rather than later because that way you are on the radar sooner rather than later and it is on your record that you called. Also that way they can follow up or have discussions if they think it is appropriate. It also would remove any perceptions that you aren't too bothered and that you are being proactive.
Hi Peter - If you read my message a few up, you will see that I have contacted the hospital where I had my ablation. I will be calling them again tomorrow. What I'd like them to do is cardiovert me back into sinus rhythm.
Jean
disappointed 
Confused and Disappointed 
Disappointed and frustrated
Terribly disappointed 
