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Longstanding Paroxysmal af: What next for me?

Hi - A question or two and a bit of a moan - sorry! I have had Paroxysmal AF for 20 years. I had a pacemaker fitted in 2005 following a reaction after amiodorone which paces me at 60. Then 5 years AF clear then episodes started again.

I've had 3 ablations in past 5 years and my EP says there's nothing left to ablate and is just offering AV node ablation. I'm resisting this as everything I've read (maybe not looking in the right place), says there's no guarantee it will help me with my 3 wishes - 1 - to avoid a high rate when I'm in AF: 2 - to get off or reduce the meds (currently on 10m bisop plus apixaban daily) and 3 - not to be so symptomatic when I have an episode. Episodes are getting closer together - 3 last year and this week I've had 3 episodes, 2 requiring emergency department and an overnight. I seem to be getting resistant to the drugs. Never had cardioversion but tempted to start trying that as the drugs are really playing havoc with my life.

So, any advice/info on AV node ablation? Also was thinking about Dr Wolf's Maze but it appears this is only in US and the Cox Mini Maze isn't offered at my (Scottish) hospital. also, I'm not sure if I could have a maze if 'there's nothing left to ablate'.!

I try and stay cheery, like many of you on here, but it's starting to get me in my head space now whereas before I could cope.

Thanks for reading/listening.

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Hi,

A tough decision. I opted for an open-heart surgery – the Maze Procedure about two years ago. So far, so good.

Best wishes

J (-:

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Pace and ablate does not stop AF. What it does do is diconnect the atria from the ventricles so that the vetricle will be managed by the pacemaker. The AF can still occur but will not affect the ventricular rate and therefor your heart beat which is paced by the PM. You can still be aware of the fibtrillation but should not have the symptoms of fast irregular heart , fatigue etc which normally comes with AF.

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Hi Bob. Thanks for reply. So if I understand it, if my PM is packing at 60 then even if I had an episode, it would continue at 60? And I see something in another reply about both ventricles having a lead rather than one which seems to be important? So many things to consider with this procedure !

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Hi HatsOn,

Like you I am a long time Para AFib patient.

Your history mirrors much of my own, especially the very symptomatic reaction when I was in Afib. Try as I might I could not settle down until it stopped, then it was very stressful waiting for the next episode to start. It completely took over my life, mainly because I allowed it too.

My Dr's reaction was to supply tranquilizers, in ever increasing doses. Yes they worked fine, but until I totally educated myself and spoke to other Afibbers, nothing much changed.

My fear and anxiety was making my reaction much, much worse.

It took a while, but once I understood that this "thing" wasn't going away, and that my long term survival was about the same whether I was in sinus rhythm or Afib, I managed to wean myself off the drugs, and just tried very hard to relax, especially while in Afib.

I used meditation, and learnt to use deep breathing exercises, strange to begin with, but now it is an everyday habit.

I've now been in Permanent/persistent Afib for over 2 years, and I'm VERY proud to say now it just doesn't bother me anymore I do get symptoms like runs of fast beats and ectopics, but a few minutes of deep breathing and some sort of distraction, and I'm away cruising.

So you are not alone, there are many people out there going through exactly the same thing as you, just learn to deal with it and your body will follow.

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Oh well done you! It’s how you react which is important.

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Wonderful post. Well done you.

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Thanks you. Sounds like you are totally in charge which is great. I have returned to me breathing exercises to see if those help.

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Thank you so much for your reply, after 2 cardioversions and two very long ablations I’m back in AAFafter 18 months. Am getting so worried and nervous and am trying to come to terms with the fact it’s not going away permanently. Your attitude is admirable.

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Congratulations concup64! You are a role model.

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Great answer Concup66! Thank you.

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I do wonder if I'll be in this situation in a few months time if Ablation number 5 fails.

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I am hoping to be in your situation in the near future. I am off rate and rhythm control drugs and seem to be coping fine with my many episodes. I still take Pradaxa and Spironalactone(?)

Di

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Very similar story to yours - I plumped for AV node ablation but because my LV lead has come adrift I’ve not had the AV node ablation yet because I’m waiting until they reattach before deciding wether or not I need the AV node ablation - at the moment as the PM seems to have settled things right down. I’ve only felt 1 AF episode since implantation in October. Really it’s the last treatment option so it’s that - go back to drugs - NO thank you - or live with it for me. Open heart surgery would be too risky for me.

Interesting thing is that it doesn’t bother me psychologically at all. I do regular meditation and keep calm. I’ve not taken any drugs other than Apixaban for nearly 5 years and felt SO much better for not doing so, the AF made me feel crap some of the time but the drugs ALL of the time.

What is your concern about the AV ablation? The info I was given that as long as both ventricles were paced, not just one as in a normal PM which was used for less than 40% of the time, then the outcomes were optimistically good as although, as Bob explained to you might continue to feel the AF - you wouldn’t be as symptomatic. If just feeling it bothers you then I would find some way of adjusting as Concup66 has managed to do, maybe with some psychological help or meditation?

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I do sympathise but perhaps my situation may give you some hope. I’ve had af for twenty years and had a pacemaker for 10. Last year at my annual pacemaker check up I was told that it had completely taken over, that I was in persistent af (about 300 bpm) and that was perfectly OK! It was like having a spontaneous pace and ablate they told me. My consultant agreed with all of this but decided to give me an exercise stress test which showed no structural damage - so to keep calm and carry on. I have no symptoms now nor am I on any pacing drugs. Anti coagulants of course. I’m playing golf twice a week and getting plenty of exercise. Looking forward to my 85th birthday.

All the best to you.

EricW

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Eric you are an inspiration! Enjoy your golf.

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That is some story Eric and it had given me some hope going forward. Enjoy your golf !

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EricW, I think you have given us all hope. Thanks!

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This presentation by Dr Jonathan Pitts Crick may be helpful to you.

atrialfibrillation.org.uk/a...

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This is very helpful, thank you

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Hi I had a Pacemaker fitted 2 years ago and have just had my AV node ablation and I feel so much better.

No meds no AF .

Just like you I have had 3 ablations and was advised that any more would be useless, I suffered from AF for 20 years and now I don’t.

I will post a further update after my Pacemaker review at the end of the month.

Good luck

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Thank you that is giving me some hope. Glad to hear it went well.

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My mother is 93 yrs old. She’s had afib for over 30 yrs. She has a PM to keep her heart beat from going below 60 beats per minute. Lately she’s had some tachycardia - heart rate up to 152 beats per minute. The cardio suggested an AV node ablation. She told him she wasn’t interested. Amiodarone is out of the question. She says she’s had afib for so long that she just sits in her recliner now and breathes and meditates. This is how she handles her episodes. She would never tell me if her episodes continue for a long time as she won’t go to the ER anyway. Her doctor sees her every 3 months. He doesn’t like the tachycardia, but she won’t do anything about it anyway. She takes Eliquis, metoprolol, lasix and thyroid medication. Plus magnesium.

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Hi. I am in a similar dilemma but have had af every day for hours for years. If I only had it 3 times in a year I think I would try the breathing exercises etc unless it goes very high and cardio version needed each time. Does the high dose of bisoprolol work. I dont find it helps much when I increase the dose and makes me very puffed on any exertions. I just want to know if the af is going to shorten my life if I ignore it.

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Hello Icenae. Gosh that’s not so good. When I read that, I realise I am prob lucky only having a few episodes a year. I usually have flecainide then bisop top up when in hospital. It works after several hours. I started magnesium taurate Tuesday this week plus omega 3 fish oil so will see if that helps.

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