Permanent AF

When I first had my pacemaker it was set up with two leads as I was in AF 60% of the time, but I was constantly gasping for breath. 

They tell me I am now in AF 100% of the time and so they have switched off my upper lead. 

Has anyone else had this happen to them and has it helped?



Permanent Atrial Fibrillation (AF)

by Gemita - 2023-03-09 18:36:39

Hello Di, so sorry to hear about your permanent AF.  AF is miserable I well know.  Have you had an AV Node ablation?  If so you will already know how it feels to be pacing in the right ventricle with the loss of Atrial to Ventricle synchrony.  There will also be a loss of cardiac output too from the loss of the "atrial kick" (atrial contraction).

Since you are in permanent AF now and presumably your AF is happening at high heart rates to have caused your symptoms of “constantly gasping for air”, it seems to me that it would be best to prevent any fast atrial signals from being sensed by the right atrial lead and transmitted to the right ventricle.  You should be better off symptom wise having the right atrial lead turned off, leaving your AF or any other atrial tachyarrhythmia to continue in the atria without affecting (pushing) your ventricles too fast.  Your right ventricle would then be paced steadily, without the irregularity of rhythm and high heart rates that come with AF.

However, you need to ask your doctors what they intend to do if anything about your AF.  Ideally I would want it stopped but this may not be possible anymore?  Some members have successfully stopped persistent/permanent AF, although at this stage it becomes increasingly more difficult.  On the other hand, if you have already had an AV Node ablation, I presume they will just leave your AF fibrillating in the atria and focus on pacing in the right ventricle. 

My husband has persistent/permanent AF and has a single lead pacemaker to his right ventricle.  He is doing okay but he has AF with a slow ventricular response rate, so his doctors are not too concerned.  I have dual chamber pacing and AF with a rapid ventricular response rate, but fortunately my AF is fairly well controlled and I hope to keep it this way. I am mostly paced in my right atrium.

From speaking to members here who have had an AV Node ablation to control their AF, they seem to be doing very well.  Good luck Di.  Please let us know how things go?


permanent Afib

by AgentX86 - 2023-03-09 22:25:13

Turning off the atrial lead is expected.  You don't want the AF to be transmitted to the ventricles.  When you were in paroxymal AF it was possible to sense it, then turn off the AV syncronization until the AF stoped. Since you're in permanent AF, there is no reason for the switch anymore, so no reason for the atrial lead.  You're paced now paced VVIR, I'm sure.

I'm in the same situation, though never had the atrial lead.  I was in permanent AFL from the beginning. While I'm still in AFL, I don't feel it because the atria no longer matter. I don't get the "kick" from them but I'm not in competetive sports so it doesn't really matter.


Thank you

by DiD - 2023-03-10 03:47:29

Thank you for your replies. I had an AV node ablation in November and hope to speak to my EP about my latest turn of events next week. 

I was beginning to wish I had never had it done, so will see how this goes. 

thank you


Perhaps your atrial lead was the problem following your AV Node ablation?

by Gemita - 2023-03-10 06:26:02

Di, perhaps leaving on your right atrial lead was always the problem with your permanent AF fibrillating away in the atria, since the whole purpose of the AV Node ablation is to disconnect the upper chambers from the lower chambers permanently, blocking off all signals from the toublesome AF. 

Now that the lead has been permanently switched off, you shouldn't notice the atrial disturbances quite so much anymore and you may finally have a chance of healing properly and having a steady heart rate set by your EP.  Of course it will never be as good as having fully functioning atria (without AF) but in the presence of 100% AF that cannot be controlled by medication, cardioversion or a regular pulmonary vein isolation ablation, an AV Node ablation in the presence of out of control heart rates may be the only solution.  Perhaps this was the case for you and why an AV Node ablation was recommended?

I see you are also in the UK.  I was offered an AV Node ablation some years ago, but I am holding off until I have no other choice.  I hope you will feel better soon.


by DiD - 2023-03-10 06:45:23

The whole thing has been a bit of a palaver. Three goes to set top lead, two for bottom and two goes to finish off AV node ouch. 

Oh dear Di

by Gemita - 2023-03-10 07:14:11

that doesn't sound like an experienced team with two goes to finish off the AV Node ablation, but perhaps you were a particularly complex case?  An AV Node ablation which is usually a quick fix can sometimes fail, but this would be quite unusual.  

With AF fibrillating and sending signals in all directions though, I can imagine the difficulties they have had getting your Settings adjusted.  I don't think they were ever going to succeed to be honest.  No wonder you are fed up.

Do you feel any better with your right lead switched OFF or have you noticed any improvement in your symptoms?  I do hope so.  

What is your lower rate limit set at?  They usually set it slightly higher after an AV Node ablation (around 80-90 bpm) to prevent ventricular ectopics and more importantly to keep you safe since there is a small risk immediately following the procedure of having a serious ventricular arrhythmia.

Anyway, I will stop now and hope that you will have a helpful talk with your EP next week and please let us know how you progress.  Lots of luck


by DiD - 2023-03-10 08:30:54

I'm now set 50-120. Used to sleep in 40s. Have been told to exercise gently for two weeks and then they will tweak it overnight if necessary 

tweak it overnight

by AgentX86 - 2023-03-10 12:28:51

I don't know what that means.

You shouldn't notice the loss of AV synchrony unless you're a performance athlete.  The atrial kick ammounts to about a 20% increase in efficiency at the high end of the heart's ouput.  You'd never get there anyway. Limited to 120bpm, you won't even come close.  I wouldn't worry about that.  It's a great trade-off to be rid of the damn atrial arrhythmias. That doesn't mean there won't be ventricular arrhythmias (PVCs) but the AV ablation will get rid of any SVT. As you suggest, it's a one-way street, though.  I certainly wouldn't go back.  The only (slight) worry is being completely dependent with no backup (escape rhythm) for the PM. I have to ventricular leads to eliminate the larger risk of failure.

It seems that your EP doesn't have a handle on things.  I don't know how the NHS works but can you change EPs?


by DiD - 2023-03-10 12:49:57

Thank you for replying. I have an escape rhythm of 35 and I have a monitor beside my bed through which any minor alterations can be made. 

your last sentence above does not make any sense

by new to pace.... - 2023-03-10 18:19:26

I have a bedside monitor and all it can do is transmit the information from my pacemaker.  For me i have to go into the pacemaker office to have any adjustments made.

new to pace

minor alterations

by AgentX86 - 2023-03-11 00:08:52

I don't believe this is possible.  It would be a security hole you could drive a train through.  I've never heard of any such system that can be used for anything other than reading status from the pacemaker.  ...things that can't get you into trouble.

It's good that you have an escape rhythm.  I wouldn't worry too much about having an AV ablation, at least because of a failure.


by DiD - 2023-03-11 05:36:18

Why would a nurse at the Pacemaker Clinic and a highly qualified Biotronik technician both lie to me. I'm sure over Bluetooth all things are possible as long as your password is sufficiently enabled. 

A friend has a shunt and the valve for that can be controlled over the phone

Bluetooth changing settings

by new to pace.... - 2023-03-11 07:43:54

I just looked did a google search for the above statement of yours. Could not find anything about it just yet. Althought that question appeared in 2015 on this site.    Am sure in the future that might happen.  It is to risky now. 

When i was  using hearing aids in the past they were able to change the settings using a computer rather than sending out for repair.  Unfortunately the person in the office doing the changes forgot to SAVE the settings.  As soon as i left the office reverted back to the previous settings. Where i  still could not hear. 

That could happen with a phone for the pacemaker new settings.  I certainly would not like that.  Not sure the techonology is there yet.  Is you country that advanced?

new to pace



by DiD - 2023-03-11 07:45:51

Pacemaker is a Biotronik Smart Messenger from Germany 


by new to pace.... - 2023-03-11 09:17:52

i just looked online to read up on your device.  No where i can find where it mentions resetting of settings.  This device is only transmitting the information from your pacemaker.  Nothing else at the moment.  

you need to ask the tech again.

new to pace

Biotronik Smart Messenger

by DiD - 2023-03-11 12:58:53

Who knows, my husband was with me at the time and he concurs with what I heard. As long as I feel fine I don't really care how they do it!!!


by DiD - 2023-08-04 06:24:49

Well, finally saw EP. You I know your in trouble when they say don't know what to do!

Lead area aching - difficult to put in so they won't want to touch for another ten years until battery replacement' Breathlessness, try another diuretic!


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