Meds and ablation

[Fullofheart]

Hi all. I'm having a bit of a mare with meds. My friend says I'm like the old lady who swallowed a fly. ..

Have to carry epipen following issue with heart meds 15 years ago. Now can't tolerate flecainide and some other drugs. Had managed AF symptoms since then with diet and lifestyle/ no meds for about 14 years, but thats not cutting it any more sadly... I think since COVID. COVID jabs also exacerbated in short term.

More recently bisoprolol led to breathlessness and introduction of inhaler. Edoxaban ( for cardioversion) led to bleed in eye. They initially thought TIA but now being tested for glaucoma. Amiodarone led to underactive thyroid (unbelievable fatigue, worse than AF) and now on dronedarone. My question....can anyone else relate with this and the associated frustrations? Feels like a new problem each week and having major impact on work and general health. Despite 17 years of AF I was otherwise fit, healthy and active.

Having consultation for ablation in Dec. Not sure how long wait is for the procedure but feel moderately hopeful for a way out of the medication loop but...2nd question... wondering how others with long term AF have found the usefulness of that intervention? I have a cousin with HOCM diagnosis who has found this life changing but I'm aware different efficacy for AF.

Any thoughts welcomed. Thanks 😊

[BobD Volunteer]

Ablation must be considered part of ongoing treatment. I had three between 2004 and 2008 since when no AF but subsequently developed a different arrhythmia in 2017 for whch I had a slightly less successful ablation in 2019. Now contolled with small dose of drugs and of course anticoagulation for life.

[Fullofheart in reply to BobD]

Thanks for responding with your experience BobD. Sounds like another kind of loop, but with a good period of relative stability before developing a different arrhythmia?I'm not on any anticoagulant currently. Less risk off them (age etc) than the potential risk of taking them, for now, so I'm told. Would tend to agree, given my response to most medication.

[KMRobbo]

Had a PVI CRYOABLATION for AFIB Jan2018 no AFib since. No drugs since May 2018.

[Fullofheart in reply to KMRobbo]

Many thanks for your reply. That's helpful and interesting to hear. And good news for you by the sounds. Well done!

[KMRobbo in reply to Fullofheart]

I think the "well done" is for the EP who did the ablation. I just lay there! 😁

[Fullofheart in reply to KMRobbo]

Ha ha. Fair enough! 😄

[leofric]

I agree with BobD that ablation needs to be considered. You have had a very poor time with medication and ablation could potentially get you out of that. It is not guaranteed. Like BobD I have now had three. The first one was good for 7 weeks, the second one lasted 3.5 years until late last year and this year I have had what is called a convergent ablation where you have two procedures, one going in through the groin which is usual and, before that, one going in (keyhole) through the chest. This, as I understand it, allows access to a different part of the heart.I have been on Amiodarone since the latest AF started, have had the dose halved following the second part of the ablation and hope to come off it in January. A previous 3 year stint on it ended when my thyroid was upset by it. I shall be well pleased to be off it.

I recommend the free leaflets on these issues on the website of the Atrial Fibrillation Association.

[Fullofheart in reply to leofric]

Thanks for your time in responding. Your insight is very helpful and the info all to be considered. I have seen some of the info sheets and also spoken to BHF. They suggested talking to people who have had the procedure, hence my post.And yes it's been a rough ride re meds. As I'm sure many people can relate with.

But ablation, as I'm learning, is also not necessarily straightforward. I'm also only in my 40s so I'm aware more than one ablation is possible.

Thanks again. Lots to think about.

[Magson]

Hi Fullofheart,I probably started with short episodes of AF in 1997 (I labelled them palpitations). Fast forward to 2014 and they were getting out of control.

After many consultations,tests etc I was referred to an EP. At that stage my AF episodes were frequent and longer. One thing I did for 2.5 years was to log my episodes on a spreadsheet. This was invaluable to my EP. Ablation in late 2018 was the obvious option for me. So far it has changed my quality of life. I am taking nothing for granted. In your situation you may consider ablation. Good wishes going forward.

[Fullofheart in reply to Magson]

Thanks Magson. Thats very helpful. There's not much to log as prior to the cardioversion (Sept 21) I was in AF constantly and not very symptomatic at all (other than when first diagnosed in 2004) until March 20 when I got covid. I had issues with breathlessness following that, but not intolerable. Got serious and led to admission to hospital following 2nd covid jab in March 21. Echo picked up change in heart structure. Its been all go since then and a series of med changes.Its pretty much 3 days on, 3 days off now since cardioversion. As the meds are keeping the HR under control, I don't really notice the difference too much, other than fatigue. I've never really been that tuned into the palpitations tbh, it's always been differing levels of fatigue, chest pain and breathlessness that I'm more impacted/ hampered by. Think ablation is the way to go but bit pessimistic about efficacy/ success rate. Hearing other people's experience is useful. I appreciate your response. And wishing you well also.

[NoFib in reply to Fullofheart]

Hi all Afib's, I have Paroxysmal Afib for over 10 years, 1st diagnosed routine health check, complete unawareness of having it. Never and still don't have palpitations, but more last few years awareness of fatigued, No energy, so take pulse and will find out Sinus rhythm, but these days also notice when back in Sinus, but still leaves a bit hangover, takes few more days to be back to Normal/ Energy. My thoughts more recent making up mind and have go at Ablation, as the Afib is progressive and the longer have it the worse will be and more often? as they say the more it progresses the later and harder to successfully treat it ? I also then presuming as age without under controlled may have to expect worse symptoms to the Afib or Medication side effects ?

[Fullofheart in reply to NoFib]

Thanks for responding and sharing nofib. Mines been constant for about a decade so not worried about it going from paroxysmal to persistent as already there. But, somewhat unexpectedly responded reasonably well to cardioversion 17 years after 1st symptoms. I can relate to that "hangover" thing. Now I'm in and out I find I'm just starting to appreciate/ benefit from NSR then I'm back into AF. I do have some improvements since cardioversion though (or did before thyroid issues kicked in).

Good luck on your ablation journey. I'm just at the beginning of that so not sure how long a wait I have ahead. Good wishes!

[john-boy-92]

Regarding your change from Amiodarone to Dronedarone, Dronedarone is effectively Amiodarone without the iodine element. If you had a negative response to one, you will almost certainly have a negative response to the other. I can speak from experience. I had pulmonary toxicity (aka cryptogenic organising pnuemonia) from Dronedarone. Whilst in hospital recovering, the clinicians didn't listen to what I said and gave me a saline drip containing Amiodarone. Result, x-ray scans that now look like a COVID-19 infection and, a battle not to be sedated, and put on a mechanical respirator in ICU. There is also a Royal College of Physcians of Edinburgh paper on my case, that is posted on the Internet.

[Fullofheart in reply to john-boy-92]

Thanks for taking the time to respond john-boy.I was on dronedarone before amiodarone. I think the former is less associated with thyroid issues but both are flagged for liver, but I'm not aware of the condition uou mention. Will look it up. Im having regular blood tests. Got one later today in fact, so will see what they indicate.

Sounds like you have had an extremely bad response to medication. Hope you are on the mend and wishing you all the best. You've really been through it.

[john-boy-92 in reply to Fullofheart]

My case paper is at: dx.doi.org/10.4997/JRCPE.20...

posted in 2015 by the Royal College of Physicians of Edinburgh

Regards

John

[Fullofheart in reply to john-boy-92]

Thanks John. Interesting paper. Sounds like speed of recognising the symptomology linked to medication and providing prompt intervention was/is key. Thanks for sharing. And pleased to read no significant ongoing issues. I wonder if your previous good health and fitness levels aided that.