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Anyone diagnosed with PV AFib but actually had vagal ?

Posted by melloland @melloland, Jun 22 9:00pm

Hi everyone, I’m sharing my story to help others who may be misdiagnosed.

I was originally told I had paroxysmal AFib likely caused by pulmonary vein triggers. But during my ablation, no electrical activity was found in the pulmonary veins. Instead, activity was found in the right superior ganglionated plexus, nerve cluster confirming that my AFib was vagally mediated.

Looking back, the signs were there all along—but they were easy to miss:

I had no underlying heart disease and a structurally healthy heart.

I’m under age 55 and had episodes mostly at rest, especially after meals or lying down.

My heart rate was calm before going into AFib, unlike the stress- or exercise-triggered episodes more typical with PV-AFib.

Beta blockers made my symptoms worse, increasing fatigue, gas, and vagal pressure.afib episodes

This type of AFib reacts very differently to standard treatments. I wasn’t told about vagal AFib before the ablation, and I wasn’t given the chance to explore more aligned approaches beforehand.

If you’re dealing with strange symptoms, if your episodes don’t fit the typical pattern, or if you’re getting worse on medications that are supposed to help, you might want to consider vagally mediated AFib.

I’d be happy to share more about what I’ve learned and what’s helped me recover. You’re not alone—and your AFib might not be what they first said it was. Vagal is not the same as pv afib.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

bake | @bake | Jun 29 1:06pm

I would be very interested in hearing about your management/recovery of your afib issues. I also have been diagnosed with PV-afib but have many of the same symptoms that you've talked about.
When I initially talked to the EP, I got the feeling that he didn't want to hear about the possibility of the vagal nerve being a cause of my afib. I have not had an ablasion yet.

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1 reply
moski | @moski | Jun 29 1:18pm

I like to hear more about it. I’m just started acupuncture to stimulate the vagus nerve . I hope it stops my random Afib.
There’s only a few doctors nation wide that practice gut to brain Afib.
I need someone on the west coast

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1 reply
moski | @moski | Jun 29 1:20pm
In reply to @bake "I would be very interested in hearing about your management/recovery of your afib issues. I also..." + (show)
@bake

I would be very interested in hearing about your management/recovery of your afib issues. I also have been diagnosed with PV-afib but have many of the same symptoms that you've talked about.
When I initially talked to the EP, I got the feeling that he didn't want to hear about the possibility of the vagal nerve being a cause of my afib. I have not had an ablasion yet.

Jump to this post

I’m right there with you! If you find someone tell me.
I just started acupuncture for this. I hope it helps.

REPLY
diane987654321 | @diane987654321 | Jul 6 9:44am
In reply to @moski "I like to hear more about it. I’m just started acupuncture to stimulate the vagus nerve..." + (show)
@moski

I like to hear more about it. I’m just started acupuncture to stimulate the vagus nerve . I hope it stops my random Afib.
There’s only a few doctors nation wide that practice gut to brain Afib.
I need someone on the west coast

Jump to this post

I’ve been doing vagal stim of my right costa conchae daily since March. I credit it with helping me reduce my afib episodes from weekly to once every 3.5 weeks. My PV were ablated in May, no afib since, but if I skip vagal stim I have a lot more PACs. I use an ear clip, ultrasound gel, tens device at 20 hz in my right ear for about 30 minutes. I can usually tell when it’s time to stop. I do it before bed. Cheap, easy and effective for me. I can provide references and links to what I use if anyone is interested. My heart rate is always bradycardic, vagal stim at the intensity I use doesn’t decrease it. I monitor it to make sure. I definitely had vagal triggers for my afib, but I think my pulmonary veins were the instigators. It is a lot easier and safer to do the PVs. I asked my EP to map me prior to ablating but I don’t think he did, at least I couldn’t find any tracings in my medical records. My heart is SO MUCH BETTER after my ablation.

REPLY
1 reply
diane987654321 | @diane987654321 | Jul 6 9:48am
In reply to @diane987654321 "I’ve been doing vagal stim of my right costa conchae daily since March. I credit it..." + (show)
@diane987654321

I’ve been doing vagal stim of my right costa conchae daily since March. I credit it with helping me reduce my afib episodes from weekly to once every 3.5 weeks. My PV were ablated in May, no afib since, but if I skip vagal stim I have a lot more PACs. I use an ear clip, ultrasound gel, tens device at 20 hz in my right ear for about 30 minutes. I can usually tell when it’s time to stop. I do it before bed. Cheap, easy and effective for me. I can provide references and links to what I use if anyone is interested. My heart rate is always bradycardic, vagal stim at the intensity I use doesn’t decrease it. I monitor it to make sure. I definitely had vagal triggers for my afib, but I think my pulmonary veins were the instigators. It is a lot easier and safer to do the PVs. I asked my EP to map me prior to ablating but I don’t think he did, at least I couldn’t find any tracings in my medical records. My heart is SO MUCH BETTER after my ablation.

Jump to this post

I used to stick an acupuncture needle in my tragus and do the electrical stimulation but I think my tragus is innervated by more than just my vagal nerve, I had weird eye and jaw sensations when I did it. The ear clip I was using was horrible and the acupuncture needle hurt a lot less. But now I have a better clip and the costa conchae feels a lot better.

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