I’m looking for anyone with a history of paroxysmal afib and a pacemaker who’s had an av node ablation and lived well with it, having had no hospital admissions, but who is now in permanent afib and has breathlessness as a result. This is me now.
I’m having adjustments to my pacemaker settings to try and overcome the breathlessness and wondering if anyone has had success in this area. Any and all suggestions welcome.
Just to be clear, you’ve had the AV node ablated?
That’s me! I have a few busy days but will reply as soon as I can. Bit of a minefield isn’t it!
yes
Hi yes I've had pace and ablate, was in HF and AF and was struggling with breathless ness, fatigue and energy levels, had a crt pacemaker upgrade Sept 24 and cardio version dec 24
Hi that’s interesting thanks. I didn’t realise a cardio version was an option once I’d been ab node ablated. Appreciate the response.
Yes it's an option, had pace n ablate July 2022 was in permanent AFib not long after and heart failure due to lvsd needed a crt 3 lead pacemaker which I got in Sept 2024 then had cardio version last December to rid me of the permanent AF, still out of AF, but still get very tired, struggling with energy levels but at least I can walk the dog without getting breathless and feeling like I'm going to pass out.
Thanks that is all very good info to help me explore my options going forward. My journey with afib started when I was in my mid forties. I’m now 72 and want to live a life of quality, not as sn invalid.
I'm 53 and wouldn't say I'm 100% but I think it's as good as it going to get, had a meds review the other week, EP said I could withdraw from taking the anti cogulant due to not being in AFib but need to take my other meds (bisoprolol, dapagalozin, ramipril) for another two yrs until he considers stopping or reducing them.I still get flutter, ectopics and like I said previously struggle with energy levels, tiredness and fatigue and doing any under exertion is hard but at least I'm not in AF and HF anymore.
Good luck
my pacemaker just had its second birthday on Valentine’s Day, and I have to tell you for the most part. I feel so normal. It’s amazing. Once in a while, I will trigger off flutter, but I am finding my triggers and that’s helpful. Sometimes in fact many of the times it is my anxiety, but it’s not that bad. I have not been back to the hospital since they sent me home after my AV node was done. my only doctor visits are my quarterly device check or if I am not feeling right, but it’s be pretty bad. I don’t like going to the doctors most likely many of you feel the same. I am just doctored out at this point even with my GP. I have had some type of a viral thing since November and had extreme stress at the same time and for the first time I have to say I really have not felt well with anything. I lost a best friend and her seven-year-old a horrendous accident. has me in a bad place. I have good days in bed and if they’re bad enough, oh yes, even pacemaker. I’m not in pain, but it’s nonstop. When it’s bad enough, I have breathlessness something I really have not had since my pacemaker was fitted along with the AV node being done. We all have weak points for me. It was the being physically ill at the time I believe.
my first three months of having a pacemaker it was set differently each visit. It is now and until recently with everything I can’t believe how normal I I never thought I would feel that way again. I have never gone to the ER for my pacemaker. I have a built-in it is monitored 24 seven and if there was anything major, my doctor would know before I do. Have you spoken to the doctor about the breathlessness make sure he takes you seriously and if it’s make sure he knows it because it’s one thing to have it when you’re doing something, but I remember the days when I just could not really breathe. The day of my first ablation, the nurse leading me to my area, practically was running up the hall. I couldn’t keep up with her. I couldn’t breathe. I don’t understand when they’re dealing with people like us why they don’t ask wheelchair right away even now I might make it a point to ask for if I that bad. It’s amazing how long hospital car it is can be and how far you might have to go. It seems it never fails for me that the area I must go to is that the furthest end of the hospital from where I am lol
well I’ve been sick with this viral whatever I have had cases of breathlessness. To be honest, I had forgotten what they felt like it had been so long. Push if you must but make sure they listen to you about it. The majority of my treatments of everything have been fantastic, but if there’s something that really bothers me, I can be a real pest because it’s my body and I am the one hurting. you are in the very beginning I can’t tell you how many different meds, etc. I have been on since my implant of my pacemaker so don’t get nervous. They’re just trying to get the right fit for you. They don’t want you to feel OK they want you to feel better than that if they can. They finally found it for me. I have no regrets feel better be patient. And speak up when you need to although that doesn’t mean question everything they usually know what they’re doing, but you know your body best.
Hi HatsOn,
It may be worth checking whether or not the breathlessness is caused by the afib. Try to see a cardiologist and ask for an opinion and perhaps also see a respiratory consultant. It’s easy to see a consultant if you can afford the £200 -250 consultation fee. I’m not a supporter of private medical care but hey ho when the NHS is crumbling if not broken, what are we patients to do.
I am so sorry you are breathless. It’s a most debilitating condition. At the very least, do see your GP and see what s/he suggests. All the very best.
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