Permanent AF Again

[JC162]

Morning everyone.

I have never posted to the forum before although I do try to read some of the posts. I hope this is OK to post.

I have permanent AF and to be honest, it sucks. I was diagnosed back in October 2017 and had several cardioversion procedures, an internal cardioversion, cryo ablation and then an RF ablation in March 2019. After the last ablation I was symptom free and felt great until May of this year when AF returned. I was finally offered another cardioversion on 10th October 2022 which I happily took and it put me back into NSR. Unfortunately earlier this month AF reared its ugly head yet again and I am now back in permanent AF and yet another referral back to Cardiology.

I take verapamil and apixiban as I had a terrible time on both sotalol and bisoprolol (massive weight gain and struggle to lose it despite good diet and exercise). My GP has been fantastic and contacted Cardiology who increased my verapamil from 120 to 180 but as my HR has dropped to as low as 32bpm they are reluctant to increase any further.

Every time I go back into AF the symptoms always seem to be much worse. Does anybody else experience this, is it normal for symptoms to appear worse? I am constantly feeling out of breath and really struggle when climbing stairs or to be honest any incline. The palpitations/butterfly feeling I get can be horrendous at times and sadly last week was so bad, I felt I was struggling to breath and had a panic attack - scared me no end as I have never experienced one before. So glad my husband was there to help calm and support me.

I am trying to continue with life best I can but just wondered if what I am feeling is quite normal. My Dad has permanent AF but has no symptoms at all.

Thank you all in advance. Have a good day.

[JC162]

sorry should have said can drop as low as 32bpm and go as high as 155bpm

[Hidden]

I know, it is improper to quote own posts or comments, but here what I have said to forum-member a day before:

"You are not a "rare case". Some time ago, I have written the post under the title "Have you noticed?", which later was eradicated by the admin. In this post, I have warned the folks here that, lately, we have more and more people suffering on bradycardia, with more or less frquent excursions in SVT, falsly considering it to be AF-attacks, which they are used to. Usually, the HR is in the 40-ties or 50-ties at rest, spiking, for short intervals, at 130-160. In your case, only the frequency is slightly increased (70, going up to200), but everything else fits in. If you have the possibility to trace it electronically, the device will give you the information "possible AF" or similar, because it really is like AF, but is in fact something very different. Just look at the people's reports, we have more and more of such cases (rarely understood by the sufferers). I wish you well!"

Analyse, please, your case, and see if it may be SVT, where the symptoms are much worse than in AF.

Kind regards!

[JC162 in reply to Hidden]

Thanks Nesko

[Dalmatianangel]

I’ve been on Sotalol for 7 years. I was on 160 mg twice a day. I did well except for a low pulse (40-50). I gained weight from the time I developed A Fib until ten months later when I went on Sotalol from not being able to get up and move due to se ere shortness of breath. Was barely able to get up to the bathroom.

I went back into A Fib in Feb. this year. Has an ablation in July and the cut my Sotalol to 80mg twice a day. They tried reducing it to 40 mg the stopping it but I started having daily flutters. They restarted the 80 mg twice a day and I am doing well now.

[Lynthebin]

Unfortunately I was only diagnosed 2 weeks ago so my experience with the medication is very limited. Sorry I can’t help or advise you. Take care of yourself,

[JC162 in reply to Lynthebin]

You too and I hope you get a good plan to help you with your AF. Take care. xx

[JC162]

Thanks for all your lovely comments. My GP forwarded my ECG taken last week to the Cardiology department and one of the lovely Arrhythmia nurses called me today. She has spoken with the consultant and have a plan of action. First plan is to put me on Flecainide and on the list for another cardioversion. They also agree that a 3rd ablation would be beneficial so on the list for that too which I am happy about. The only downside is that there is a wait time of 6 to 9 months for the ablation. However, there is now light shining at the end of the tunnel.