Hi - I’m fairly new here. I feel in the minority sometimes with the way that my arrhythmia episodes present, so I’m reaching out for some support or advice and to see if anyone else experiences similar to me. My Cardiologist has indeed described me as an anomaly! Apparently I have some scarring on my right atrium, possibly the aftermath of a potential virus that I had 7/8 years ago, but no one knows for sure! Otherwise, healthy.
I generally suffer with paroxysmal AF/tachycardia.
Ive had 2 ablations which haven’t really helped. I take Sotalol 80 mg daily (increase if I’m in an episode, (which I am unfortunately in just now )) diet and lifestyle are generally good. When I look back over the years, I can think of many episodes triggering if I have reached for something, or bent down plus also waking me up during the night or just waking up in the morning in AF/tachycardia. Sometimes it has triggered when walking outside and up a slight incline! It sounds mostly vagal tone related to me?
The pattern for my symptoms are generally the same during an episode ….. starts off with AF (irregular HR, not too high), then sometime afterwards will go into tachycardia (regular, 110 to 120bpm ish), then when it seems I’m on the way to converting, will regularly flip flop between the 2 (and sometimes Flutter too so I am told). On occasion, HR has suddenly shot up creating awful dizziness with me having to go to A&E, but most of the time the episodes are manageable enough at home. Conversion to NSR is generally just a matter of time. Has been as little as 30 mins or as long as 5 or 6 days (the latter is luckily not too often, usual would be 1 to 2.5 days or so).
Does anyone else experience anything remotely similar?
Any advice or tips? Also, Is there anything that you do to help come out of an episode?
Thank you if you have managed to read this far!
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Hether8
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Diagnosed in 2007 with occasional episodes which self-converted mostly in a few hours - longest was 36hrs.
Drug therapy 2007-2013 - just made me feel rotten all the time and didn’t help stop or prevent episodes - Bisoprolol and Flecainide.
2013 - 1st ablation - made everything a lot worse.
Went on anticoagulants from Nov 2013, prior to ablation.
2014 - 2nd ablation - peace at last! BUT didn’t recover as underlying condition diagnosed which went a fair way to explaining other symptoms so all heart medication was stopped.
2014-2017 - no arrythmias but had to stabilise the other condition & had TIA
2018 - AF returned with increasing frequency so choice was Amiodarone or Pacemaker with AV node ablation.
2018 - Pacemaker inserted and no concerning heart or BP issues since.
Prior to Pacemaker insertion -
My BP would drop through the floor when in AFib with high HR - hence the dizziness etc.
Reaching or bending down could be a trigger (not always) so indicated postural and therefor vagal AF so I did a lot of work on soothing vagas nerve which helped to a certain extent.
Lots of other triggers, foods, alcohol, caffeine etc.
Beta blockers of any description made things a lot worse for me so I was MUCH better when I stopped taking them - however you must consult your cardiologist about stopping any meds. I just refused to take Sotolol period as I was warned off it’s use by a specialist.
Sometimes AF is a long journey and takes many different directions and there is no such thing as ‘typical’ AF - we all react very differently.
I’ve tried all sorts of things to convert to NSR - some have worked some of the time, nothing consistently. I have blogged here about them over the years - the most unlikely was probably the Pothole incident.
The biggest AF antagonists for me were any infection and stress so managing stress and breath work, meditation and distraction rather than focussing on what my heart was doing were the most constantly effective strategies, along with rest. Avoid physical activity when HR was elevated - otherwise always went into AF. Keep well hydrated - dehydration was a sure trigger. Take at least 6g of salt daily along with water as I am hyper mobile and so are my blood vessels meaning blood pools in legs - hence low BP and high HR.
Mange electrolytes - coconut water is good if you get dehydrated and if electrolytes are out of whack but best don’t ever let them get out of whack.
Many find Magnesium supplements can also help, I can’t take oral magnesium so use magnesium oil as a spray as it is absorbed through skin.
Thank you so much for your reply CDreamer, I really appreciate it.
When I was under investigations for the reasons behind the arrhythmia episodes, nothing at all was found. The scarring was picked up 2018 during ablation. All this started when I was reasonably young, around 44, and gradually since then I’ve been improving my diet, supplements, lifestyle , adequate fluid intake, etc and looking at as many natural ways as possible to help keep it under control, but episodes kept coming on and my Cardiologist advised Sotalol in 2018 post ablation number 2.
Interesting that beta blockers worsened your symptoms … I am unsure as to how well the Sotalol is working, it doesn’t stop episodes from coming on but keeps the HR lower once in an episode, but I have needed A&E on occasion when my HR has shot up 🤷♀️.
Agree with infection and stress, plus vagus nerve - I’ve recently started working on vagal exercises, and regularly meditate in any case but I do have a current stressful situation going on at work so I am sure this is not helping, and likely this is the main antagonist at the moment. I think certainly for women of my age, hormones play a huge part in managing stress and anxiety, I don’t think I seem to manage it as well as I used to.
I’m really pleased to hear that you found a solution with the pacemaker - may I ask …. how do they work, how long do they last for, etc?
Pacemaker - as nothing was helping and by then I had developed this other condition I was at the end of the line regarding treatment and left with only 2 choices - Amiodarone which was far too high risk for me in my opinion as I knew I couldn’t cope with anything else developing and Amiodarone’s side effects are serious.
The other option was Pace and Ablate = step 1 - Pacemaker is inserted and established and monitored for 6 weeks. Step 2 - Ablation which takes out the AV node which is like a junction box and sends through the electrical signals from the atria to the ventricles. What this does is make you almost totally reliant on the Pacemaker and stops the rogue electrical signals being conducted through to the ventricles, even though you may still experience some arrythmias, including AF, your pulse will regular and steady.
I received a Re-Synchronisation Pacemaker meaning that both the ventricles were artificially paced. The effect after implant was so amazing - I felt well, so well that after the 6 weeks and time to have the AV node ablation and after speaking to my EP I cancelled the procedure as I’d not had any symptomatic Arrythmias and to date, only had very short AF episodes and have felt a few seconds of Tachycardia.
It seems that my heart just needed to be taught a thing or two about pacing and once it got the hang of it, has behaved really well. The AV node ablation remains an option if my heart goes haywire again and then the Pacemaker will take over 100% to keep my pulse steady - which is what improves the symptoms.
My EP said he had a few patients for whom this had happened - had the PM implanted and then not required the AV node ablation. My PM is monitored by an App on my smart phone so I only go into clinic for a check annually. I’m told that my PM is working 90% of the time. I have a friend who also ended up with a pacemaker with similar results.
I remember a friend way back in the day when I first developed AF asking if they would use a pacemaker and at that time the answer was a firm no because it didn’t help but it seems to be making a come back as a possible treatment.
PM implant is a day procedure done under only local anaesthesia and painkillers which as sedation and GA are very risky for me was ideal.
Thanks for the interesting post! Not so many people have reported such frequent skipping between different kinds of arrhythmia, despite it is known that it is quite possible.
Thanks for your reply SteelHeart, it’s definitely the norm for me. Agree, I also haven’t seen much anecdotally so thought I’d see if anyone on this Forum experienced anything similar. Thanks again for your reply, keep well.
The trigger you mention of reaching and stretching is one that can happen to me. My first attack of tachycardia (and atrial flutter, I later learned) started when I carried a box above my head up into our loft. I have been told that certain body positions, or even other things like eating a large meal, being bloated, swallowed air from anxiety, intestinal gas from constipation and similar can all cause the stomach to be stretched and pushed up against the diaphragm bringing that into direct contact with the base of the heart. Apparently, this can cause sufficient irritation to bring on ectopic beats and for those who have PACs, this could then trigger flutter or fibrillation. I have a small hiatus hernia, too, and have often wondered whether stretching and similar don't affect this and cause that to irritate the vagus nerve nearby?
I’ve also noticed ectopic beats with sluggish digestion, or feeling bloated etc but improved it fairly quickly with supporting my microbiome with probiotics (kefir, etc).
I’ve also read up so much on the vagus nerve recently and started doing some of the exercises which are simple and take very little time. We never hear anything about it at medical appointments do we, when it feels like toning the vagus nerve could be a great help to us, also with releasing anxiety.
It’s true that doctors don’t go along with some ideas from patients and the internet. The arrhythmia link with digestive disorders is one. My cardiologist told me that he agreed there was a link but that it was far more unusual than people thought.
Vagal nerve irritation is another, for sure. He told me that when the nerve was genuinely irritated but only in certain unusual medical conditions when the effect was severe with major bradycardia and similar combined with swings of tachycardia.
In the end, I’ve come to prefer the bloated stomach theory! It might be perhaps very much more common than realised and would even perhaps explain many of the various food “triggers” that many speak of.
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