The Story So Far

[Kernowafibber]

57 years old.

Diagnosed with Lone paroxysmal Vagal AF in 2000. Controlled for years with Flecainide, then flecainide + Bisoprolol. Became drug resistant.

Cryo-ablation November 2021. Not successful. Stabilised with Bisoprolol + Digoxin.

RF ablation July 2022. Not successful. Currently taking Dronadrone + Edoxaban.

I have always felt that my AF is triggered ‘physically’, e.g. tightening a belt, drinking a cold drink, yawning/stretching. Like many I have tried to isolate external triggers but have failed.

Currently I am experiencing long bouts of AF, often different to the violent flip-flopping of the heart that I used to experience. I am experiencing quite severe postural hypotension and some dizziness. Luckily no breathlessness.

My cardiologist has given me three options.

1. Change to Amiodarone. ( I am reluctant to do this)

2. Pacemaker.

3. A further procedure which was described as ‘going up through the diaphragm’. I assume this to be external Maze?

AF really does rule your life. Fit as a fiddle one minute but feel quite unwell the next.

I am keen to learn of anyone who has been down a similar route.

[secondtry]

Based on what has worked for me:

Sounds like you have vagally mediated AF. I would read as much as poss on the Vagus Nerve and try and reduce its sensitivity. To do this I would work on the mind and the gut as both are connected by the VN to the heart. So lots of stress reduction action on all the fronts (eg work, family, friends, Mindfullness, prayer & no late night crime dramas) you can think of and for the gut a highly critical review of your diet/eating/drinking habits.

I would then add into the mix a magnesium compound & CoQ10 plus regular daily x2 brisk walking for 1 mile...every day come rain or shine!

[CDreamer]

I agree with Secondtry - meditation and mind relaxation and gut are the first areas to focus on. The microbes in our gut are both helpful and destructive - have too much of the destructive blighters and they will cause all sorts of problems. It’s no coincidence that Autonomic Dystonia is often associated with Diabetes.

There is a lot more research going on with Autonomic System and Gut/Brain responses so certainly look at that. A brief outline:- healthline.com/health/auton...

The trouble with trying to isolate triggers is that there may many and fluctuate, least that’s what I found. Things I couldn’t tolerate one day - my body didn’t react to the following and vice versa.

Cutting out all sugar and working on mind relaxation and eliminating stress from your life is the first thing I did.

I was left with similar options to those you were presented with and went with Pace and Ablate - only the pacemaker on it’s own worked for me so I never went ahead with the AV node ablation which happens about 6 weeks following the pacemaker implant. It was the best thing I ever did as I had POTs and near syncope and lots of other unpleasant symptoms with the Autonomic response. All vanished almost overnight and my personal theory is that the pacemaker took away the burden of controlling BP and heart rate enough to allow healing.

The one thing I learned was that Bisoprolol and Beta Blockers harmed and now I have a Red Alert on my medical file:- richardbogle.com/blog/vagal...

Hope some of that helps.

[Ppiman]

I've read that low dose amiodarone is very popular and safe. It's a difficult choice and life at times. All very worrying, too.

ncbi.nlm.nih.gov/pmc/articl...

Steve

[TracyAdmin Partner]

Thank you for sharing your post, your Consultant will be able to advise the correct form of treatment suited to you personally. They have access to your medical records and will be able to take into account your condition, age and any other underlying health conditions. You may wish to download our 'Treatment Options for AF' booklet from our patient resources on our webpage: heartrhythmalliance.org/afa...

book

[Kernowafibber in reply to TracyAdmin]

Thank you for that. My Consultant is a great guy and an expert in his field. However one thing that I have learnt over the years, is that the electrophysiology of the heart can be a mystery, even to the experts. Even when the percentages are in your favour there are no guarantees. I am keen to see if anyone else has followed a similar journey.

[dmack4646]

Why a pacemaker ?

[Kernowafibber in reply to dmack4646]

I have been given three options. 1. Amiodarone. 2. External ablation. 3. Pacemaker.

[Jimmy37]

Kernow , was offered the same options chose pacemaker and ablation have never regretted it, amioderone is sheer poison made me very ill avoid! wish you well.

[Kernowafibber in reply to Jimmy37]

Thank you for sharing your thoughts. Can I ask your age? My cardiologist seems concerned that I am too young for a pacemaker. Would you say you have retained your fitness levels since the pacemaker?

[Gumbie_Cat]

I’ve not done well at isolating triggers, but do tend to get long bouts. I need to stand up very slowly, or the room spins!Sometimes I feel like it happens when resting rate creeps down into the forties.

I got a Kardia a few weeks back, and on the days before my recent episodes it has recorded ‘Normal sinus rhythm with premature ventricular contractions’. Most of the time I get ‘bradycardia’. Though I will take that over today’s ‘atrial fibrillation’!

[TenorJK]

I was first diagnosed with PAF age 56 started with Flecainide as a PIP after time increased to 50mg 2 times per day then 100mg no beta blocker or amiidarone had 4 cardio versions and on BP meds by this time I am82 !! Bisoprol made me worseSo then had pacemaker in 2020 and in May had AVNode ablation there were blips and adjustments to meds and pacemaker but am still plodding

on now 84 so you see it is a long haul but things are improving all the time

Good luck Jo

[Jajarunner]

All I can say is that amiadarone is not as dangerous as it used to be, I mean in the sense that the horror stories MN ainly CA me evtrom the Olden days when they used big be doses. Nowadays the 100 dose is often effective and low in side of effects. I posted a scientific study here recently if you want to read it. Just search under my posts. Good luck to whatever you decide xx

[MummyLuv]

Suspect if your EP is suggesting the 3 options that the last one he/she is referring to is an epicardial ablation where an EP accesses the outside of the heart from under your breast bone. This is a relatively new procedure.

As you say a mini maze could also be considered which has high success rates and worth considering when you are as symptomatic as you outline and have also had failed ablations. I’m not sure where you live but hopefully you have a local cardio thoracic surgeon who you can explore this with.

Good luck in your decision. I chose mini maze and so far I’m happy 😃