AF?

Thoughts

by Lavender - 2022-08-16 11:47:58

Some things you said:

Yesterday I was working

wasn't uncomfortable or painful

actual heartbeat on my pulse oximeter was very regular

I didn't panic, just observed.

Do you see a pattern here?  🧐Lol I see a calmed down, relaxed observant gal who's dealing well with things! 🤩The tone of your post shows me that you're coping very well these days! No longer depressed and flipping around on tv bored! You are working!🥳 You aren't panicking!😃

This part sounds so familiar! Are you sure you haven't crossed the pond and called my cardiologist nurse?🤣

The girl was slightly tetchy with me and said that they're always busy in clinic and I can't keep phoning for a check

My cardio nurse/office has trained me well by telling me how busy they are, how I need to call my pcp not them because if it is my pacemaker acting up -they will call me, sort of a "don't call us...we'll call you.  I have only called them three times in 18 months-twice when I felt woozy and once about waking up feeling vibrating sensation. The woozy ended up being dehydration, and once it was from drinking too much water!

Honestly we should never feel intimidated to call and ask questions. New pacemaker people need more reassurance and are learning the ropes. 

I'm not able to comment on A Fib-no experience. I AM able to say-you go girl!! You're a real trooper these days!!🥳

Some thoughts from me too

by Gemita - 2022-08-16 12:40:34

Toni,

Couldn’t agree more with Lavender.  Your doctors need to understand that you want to know what is going on and want to be an equal partner in your care.  Calm, polite, persistence is the way to go. 

Just to go over where we are, from your previous comments, I note that you have a biventricular pacemaker, three leads, one lead to each of your ventricles (lower chambers of your heart) and one lead to the right atrium (upper chamber of your heart).  Since you have had an AV Node ablation for atrial fibrillation, this should prevent any atrial arrhythmias from passing through your AV Node to push your ventricles too fast.  So we can say you are in permanent heart block now, if the ablation was completely successful, with the pacemaker doing all the work and not allowing your heart rate to go below 60 bpm or above 130 bpm. 

What I am having trouble understanding is how exactly your atrial lead is set up.  In DDD mode a dual chamber system can pace and sense in both the right atrium and right ventricle, but what happens when you go into AF?  Your ablated AV node will prevent electrical signals passing through the AV Node to your ventricles, but your pacemaker may still sense your fast, irregular heart beat and then what?  Do you have Mode Switch in operation during an episode of AF when it reaches a certain heart rate and duration and switches automatically from DDD mode to say a non tracking atrial mode like DDI (or I think the other mode you mentioned was VVI mode) and then switches back to DDD mode on cessation of AF?  It is a complex setting and you may feel it switching, I certainly do when I go from DDD to DDI.  I wonder if you would be better without the atrial lead, although you would be completely paced in the ventricles but you have a lead to both ventricles for ventricular synchrony.

You seem to have a complete pacing system even though you have had an AV Node ablation.  I had imagined that your atrial lead would have been switched off, leaving just your two ventricular leads doing the pacing.  Clearly they are trying to keep three leads working to offer you a more natural means of pacing especially since you are not in permanent AF, but this suggests a more complex system is in place and it might therefore be tricky to get the settings adjusted to prevent unnecessary sensing and pacing when you are in AF, in DDD mode?

I would perhaps ask something like the following, explaining that you really want to understand what is set up for your own peace of mind:-

1. Since I have a working atrial lead, what happens when I go intermittently into AF.  How do you ensure that the right atrium is not sensed or paced while I am in AF, in DDD mode?  Is something like Mode Switch in operation?  (see link below).

2. Since I clearly felt an arrhythmia like AF, can you confirm if I send you in a transmission whether the arrhythmia I felt at such a time and date was an atrial arrhythmia?  From my symptoms alone, it felt very much like irregular AF?  

3. If the answer to the above question is no, you could then ask if is it possible that the tachy arrhythmia you felt may have originated in the ventricles?  Could they please confirm whether any significant "events" were detected - like a non sustained VT episode?

4. While I appreciate this is very rare, but you could ask if it is possible that the AV Node ablation may not have been completely successful and that some signals may still be getting through the AV Node to affect your ventricles?

https://www.medtronicacademy.com/features/mode-switch-feature

I would push for a face to face meeting with a health professional to get some answers Toni.  I don't like telephone consultations.  If you attend clinic they can do a full download and if you keep the time and date of when you felt your symptoms, they might be able to correlate these with any arrhythmia present.  Good luck

Thank you

by toniorr11 - 2022-08-16 13:16:59

Thanks to both Lavender and Gemita.

Lavender -youre right that I'm getting back to normal ish but yesterday threw me a bit! I really need to speak to my cardiologist. I'll let you know but many thanks for pointing out the positives!! 

Gemita,

I am writing all your information down and adding it to my list of questions for my cardiologist. I will phone his secretary tomorrow and ask for a F2F. I'm really don't think they'll be able to get rid of the flip floppy AF arrythmia and I'm guessing that the heart rate increases because of the atrial sensing. And I'm adamant it wasn't self inflicted panic! 

This is quite a journey. Of course I'm now catastrophising and thinking if I have to live with permanent AF and my heart bouncing around in my chest I'm really not sure if I could cope!

No I don't think you will have to live with the flip flopping from AF

by Gemita - 2022-08-16 13:46:12

You should be relatively "symptom free" from AF and any continuing atrial arrhythmias after a successful AV Node ablation and certainly once healing has taken place.  My feeling is that it is the complexity of what has been set up "biventricular pacing" - 3 lead which is at the root of your problems.  Your symptoms of course could be due to a new ventricular arrhythmia like benign ectopics?

Frequent ventricular ectopics can cause symptoms and in any event after an AV Node ablation, I believe they usually set the lower rate (Base Rate) slightly higher (at 80 bpm) for a few months before slowly reducing to help prevent complications, such as ventricular arrhythmias which can occur post-operatively.  AgentX86 should be able to confirm this, having had an AV Node ablation himself.  That would be another question for your cardiologist Toni and an important one.  Why is your lower rate set at 60 bpm??  Could this be the problem if you are having noticeable arrhythmias - of ventricular origin?

Keep your spirits up.  Please remember the healing period following an ablation can be a few months

AF

by AgentX86 - 2022-08-16 14:40:33

There is something squirrely going on but it may be "just" a comunication problem between you and your doctor.🤷‍♂️ Indeed they may not be able to see anything wrong.  The nurse is absolutely correct.  Pacemakers can't see everything, only what they're programmed to see and there are restrictions on that.  My pacemaker, for instance, can't see an arrhythmia unless it's a run of at least five beats.  The threshold can be set higher but that's the minimum.

Mode switch:  The only way your setup can work is if there is a mode change from DDD mode to VVI when AF is detected.  Since I'm in permanent AFL, a mode change would be dumb so I have no RA lead and am in VVI 100% of the time.

It's possible that the mode switch isn't happening and the pacemaker is undoing what the ablation did. Since they can't see the arrhythmia and if there is no mode switch, all looks good to me".The best you can do is send a tranmsion when you feel it happing so they can read the pacemaker's EKG at that time.

The other oddity is that the heartbeat is regular.  AF doesn't explain that at all. If it's indeed AF, it's going to be irregulator. I was thinking PVCs but that doesn't explain the regularity at all and your couldn't mitigate the rate.  My next thought is flutter or SVTs. Your pacemaker may not be set to react to these arrhythmias,.

Squirrely

by toniorr11 - 2022-08-16 16:12:22

I love that word..."squirrely"! I just know exactly what you mean. 

Like most posts I'm going to have to read and re-read to understand everything... This is so hard! 

I'll let you all know what happens 🙂

Mode Switch

by Gemita - 2022-08-17 04:14:59

The poblem with mode switch is that it is usually only triggered when say an atrial tachy arrhythmia like AF reaches a certain high heart rate (this is usually set at around 170 bpm) and for a certain duration.  If these criteria are not strictly met, mode switch would not necessarily be triggered.  Your doctors would need to adjust the threshold downwards for mode switch to take place to cover all slower AF/other atrial tachy arrhythmia episodes.  Since your upper rate setting is 130 bpm, I wonder if your mode switch is set to be triggered at 130 bpm and this is perhaps why you felt your AF at a steady rate of 130 bpm?  It does seem a complex arrangement with intermittent AF, to have an atrial lead still in place following an AV node ablation and this is perhaps the area that needs further discussion to try to eliminate your symptoms?

Mode switch

by AgentX86 - 2022-08-17 22:49:07

I admit I know nothing about this PM configuration for for an AV ablation.  I've only heard of a two-lead VVIR(V)mode. I suppose the PM could detect the irregular atrial beat, disconnect, then wait for it to return to a regular beat.  Triggering a mode change by measuring rate seems to be useless to me.  AF is often not all that fast.  Mine was never above 100bpm. It was just (very) annoyingly irregular.

If you learn anything about this, please educate us.  I can only guess here.

Mode switch

by toniorr11 - 2022-08-21 10:27:18

My AF had a Fast ventricular response when it happened. but always resolved within 24hours, more often within 12hours. However it would vary between 120 and 190/200 during this period and I felt awful and always landed in A&E. 

You'll be pleased to hear that I have a F2F appointment with my cardiologist on the 13th sept. I have a lengthy list of questions and hopefully he'll have some answers then.

I had another funny episode last night which was I woke up with a sensation of a pounding heart. My head felt really wierd and I felt short of breath. I took my heart rate and it was sitting at a constant 60 and even though I could feel the adrenaline start (Fear!!) my heart rate wouldn't move. Got up and walked around a bit and it raised slightly to around high 60s. It was very regular though so I decided to try and go back to sleep and when I woke this morning it was around 70+ and felt normal again. I'll ask if this is significant at the appointment. It was only this morning I thought I should have dialled in on my home monitor. I really must stop this silly "not wanting to bother them or appear a pain in the a"£$". After my last conversation with the clinic nurse she's put me off!

Watch this space :) 

And thankyou for your help everyone x