I lost my first post so I hope Im not repeating myself.
Im a 63 year old woman with persistent AFib since 2020.
After 2 years medication wasnt holding me and I could barely walk to the front door.
Changed GP and cardiologist. 3 failed ablations later and I know in 2 weeks he will suggest pace and ablate.
My rate at the moment is between 65-140. Rhythm incredibly erratic. None of my meds are controlling it at all (I remained on Flecainide/digoxin/apixaban/lasix/& BP meds because AFib so refractory).
So. Pace and ablate will control my rate but I still have crazy rhythm. Do I feel that crazy rhythm still? And when they say MOST ppl feel better what happens if you dont? HOW does it fail?
Thank you. Im feeling very low.
Swimminglove
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swimminglove
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Hi - sorry you are feeling so low, AF can get you that way and yes it is very upsetting when treatments don’t work.
You are quite young to be at that stage in the AF journey and cardiologists tend to want to wait until you are older as a Pacemaker would need to be replaced every 10-12 years. You don’t say how often your episodes are, how symptomatic they are or for how long you have suffered from AF?
To attempt to answer your questions:-
So. Pace and ablate will control my rate but I still have crazy rhythm. Do I feel that crazy
If the Pacemaker doesn’t control the AF - yes you probably will still feel the crazy. Ask about RST Pacemakers - Re-Synchronisation Pacemakers which can be programmed to stop the AF for some people. It can prevent heart failure as both ventricles are paced, rather than the usual one. That was my experience so I didn’t go ahead with the Ablation of the AV node and very glad I had that done as it transformed my life. I am on NO meds other than anticoagulants however I do still have a little AF from time to time but at present it is about 2-3% burden.
Will that work for everyone - no, it’s very individual.
Most people will benefit by reducing the symptom burden but there are always some that don’t and I think that may come down to what other conditions you have, the state of your heart structure and vascular system. I had an otherwise healthy heart and low BP. There are so many factors that the may also contribute so ask you cardiologist’s opinion as they should have your full medical history.
TBH I think you need to be at the stage you are at to consider P&A because the only other option might be a Hybrid Mini Maze which I am sure you must have read about on this forum. Not sure where in the world you live but it is becoming more available now.
Otherwise it is going into Persistent/Permanent AF which many people report as being MUCH easier to live with than Paroxsymal.
I am a great believer in Lifestyle Medicine and State of Mind so my question to you would always be - is there anything you can do for yourself that would help your overall health and sense of well-being? It’s not always about the medicine and sometimes we have the ability to improve our own health which in turn may help our AF.
Thank you for such a comprehensive reply CDreamer.
To answer some of your questions Ive been in permanent AF since 2020 except in the six month periods ablations have relieved this burden. But when the ablations fail, as they have 3 times, I go back to permanent Af. Very quickly unable to walk to the front gate without resting. No ability to exercise. Breathless. Light headed. Unsteady on my feet. HR jumping between 85-140.
Since 2020 I have given up alcohol entirely, lost 15 kilos, now use a c-pac machine to sleep. My heart is in relatively good shape. I only suffer from asthma. Yes, young to have such refractory AF. Because the burden is heavy and nothing else has worked, the cardiologist is suggesting pace and ablate.
My fear is that my heart seems so determined to go its own way, I will be no better off, And have no way to come back.
I know just how you feel. I could barely walk from one room to another at one time when my heart rate stuck between 120-130bpm. I could even have been the same age as you. I'd drive to the supermarket and then use the trolley like a Zimmer frame. I was slow and people would rush by me and I'd think 'rude people', but I'm sure that would have also been me rushing by at one time. Everything I did was an effort and I would go into the garden put the trowel in the garden about 4 times and then feel too weak to do anymore.
Have you had your thyroid function tested, mine was discovered to be underactive? Taking medication for that gave me back lots more energy. Like you I have had three ablations and numerous cardioversions. Have you ever been cardioverted?
I recently stopped taking Flecainide on the advice of my cardiologist, he said it could well have been causing me problems and I feel so much better without it. When I took Digoxin it made me feel as though I was going mad and a bit trance like. Now I just take 25mg of Metoprolol morning and night.
I would ask if I could try different medications before giving in to having a pacemaker.
I feel fine these days and my heart rhythm stays between 60-80.
Oh gosh I recognise the shopping trolley scenario Jean. That is me too — in between failed ablations. And feeling so weak you have no energy for anything!!!!! Sitting down between washing up or making beds. Unable to walk beside my friends on a day out.
Ive never had low thyroid checked but now I will. Ive been cardioverted 3 times but it always fails. This past week in the hospital after the latest ablation failed they gave me metoprolol to bring my HR down (at one point 167 but it was jumping all over the place). But I was still out of rhythm. Are you affected still by arythmia even with lowered HR?
Also, Im glad youre so well now. I will ask my cardiologist about changing meds and trying again. It IS worth a try before doing the pacemaker.
Thank you SO much. I feel a real affinity with you Jean!
I'm now in constant AF, have been for almost 5 years and my heart rate jumps around all the time between 60-90bpm. I far prefer the way I am now and can live a fairly normal life.
Try cutting artificial additives out of your diet, artificial sweeteners were a sure trigger for my PAF attacks, it's hidden in so many places food and drinks. Sulphides/sulphites in wine are a trigger too, you can buy wine free from it but it doesn't last long without that preservative.
Do get your thyroid checked, taking meds for that really helped me. I thought the tiredness I felt was all a part of AF
I had AF for 20 years, started in my late 20s. After 3 "failed" ablations, my EP and cardiologist were talking pace and ablate but I was in the "too young" category at 47 at the time. I was looking at trying a few more users of meds, inudjng heart failure meds as I was in that category. And holding off as long as possible but ultimately having this procedure.And yes struggling with fatigue, breathlessness etc.
I have since quite miraculously gone into normal sinus rhythm 5 months after last ablation but I'm constantly told this won't last and I imagine we will be talking pace and ablate again in the future.
I did quite a lot of reading about it and though it's obviously not something you want to happen, I'd have it done if it improved my quality of life. There are people on this site who I think it has been quite life changing for.
But you obviously have to think about all the implications as it is not reversible and is a big deal.
I am hoping you can ask lots of questions of your team (and have good answers) but, if not, maybe the BHF nurses could be a good port of call?
Rest assured Swiminglove, yo are not alone on this one. Some people like you and I are intolerant of meds and excersise.. i will be seeing my GP on thursday to see where i go from here. Im resigned to pace and ablate if i want any qol. I look forward to seeing replies to your question.appently with pace and ablate we dont feel any arryhthmia. And probablyno drugs needed again apart from anticoagulant
Usual caveat about this is just one woman’s view ….. but I had P&A 4 years ago and it has transformed my life for the better. I can’t explain why some people still feel their AF (which I don’t) but I think it’s fairly rare. Yes I am reliant now on a controlling pacemaker but it is kinder to me than my natural heart!!
Thank you for this response playcards. It IS reassuring to hear positive accounts. Strangely enough they put me on a dose of metopropol when I left the hospital Friday night to hold me till I see my EP/cardiologist. And my fast heartbeat has fallen to 86-98 and Im actually feeling okay.
I didnt tolerate it last time but maybe it was another part of the drug cocktail?…. of course I have to wait and see but maybe when I see my doc this is another alternative to discuss.
All that being said, thank you for having a positive story to share😂 It gives me hope. And gosh we all need that!
I have been in regular AFIB all the time since September! On meds now but down the road I might have to get a Pacemaker today my cardiologist told me this! It will control the heart rate! Hope they do something soon, very high HR!
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