I hope this post helps some of you out there. I’ve had PAF for around 15 years that has generally been under control with the use of Flecainide and ablation. 20 months ago I had to come off Flecainide following diagnosis of mild coronary heart disease in one of my arteries.
I have been in and out of AF on a weekly basis since that time and even following a 2nd ablation that left me quite ill with stomach problems. I have always felt I had Vagal AF as my AF occurs in bed, my HR is quite low and spent my life doing endurance sports and always flip back into Sinus following vigorous exercise
My EP suggested we try Disopyramide I have now been in Sinus Rhythm for over a month the longest period since discontinuing with Flecainide and my stomach problems (that was also a trigger) have alleviated considerably.
Sorry for the long post but it’s worth knowing the background and hope it helps others that might be in a similar situation
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BigDunc
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Hi , interesting to hear that you've been prescribed Disopyramide. There are not many of us on this drug . My EP tells me that I'm his only patient taking this! I understand that it is thought to be particularly useful for vagally mediated AF.I do hope that it works well for you. I've tried every drug and this is the only one which works ( but only to a degree...) for me. However I'm 4 months post my 4th ablation and have been feeling pretty good since.
I'm currently on 150mg 3tmes daily. I used to have a higher dose in the dim and distant past...250mg twice a day. I'm not sure whether I ever took more than this. I do remember being told in the early days ( 26 years ago..) that I was on the maximum dose. Just located hospital discharge notes which stated I was on 250mg twice daily in 1998!
Thanks for the replyI had a consultation with an EP yesterday who said I could go to 750mg twice daily but as you know they do make your mouth really dry
No I haven't. I have a post ablation consultation with my EP next week. I'm currently taking 150 mg twice a day. We're treading carefully at the moment as I've had such a long and chequered history.
Surely not 750mg twice daily ?? I understand that the max dose is 800mg in divided doses. Yes , dry mouth is a big problem which you tend to get used to plus dry eyes. Also , due to anticholinergic effects , a degree of urinary retention. Useful for long journeys !😀
I too have had PAF for a long time, over 20 years, and been on most drugs but the one that has suited me best is Disopyramide and I have been on that now for many years together with Bisoporal for 4 years and a Pacemaker after unsuccessful ablation and apart from the last 2 weeks have been free of AF, then after a Pacing, first one in 2 years the last week ive had a few glitches but in the main I stay well. From my research most drugs will only give approx 1 years relief then the condition over rides the drug however Disopyramide works well for me too.
Thanks Dunc that is really useful to know for us with vagally mediated AF. So far (8yrs) Flecainide has worked but when it doesn't I will discuss alternatives with my cardiologist.
Morning, BigDunc. Does Disopyramide lower your HR and blood pressure? Does it leave you breathless?I tried Bisoprolol, a beta blocker and was very uncomfortable with it.
Hi Saul I am on a small dose of Bisoprolol 1.25mg as well. I haven’t notice any change in my HR or BP with Disopyramide however when I first tried it I felt breathless and generally awful and came off it. My ES advised to persevere for a few weeks use and I used as a PIP for a short while. He was right feel great on it now.
Just to mention my HR increased by about 10BPM following my Ablation 12 months ago it’s around 52BPM now. My EP was encouraged by this before going on Disopyramide but like my previous haven’t noticed any decrease in HR anyhow.
Good morning BigDunc, thanks for passing on your experience, I’m interested in the Nature of your Stomach Problems as I also have PAF and also suffer stomach problems with an Unpleasant sensation just under my Breastbone, I’ve seen a Gastroenterologist for this who never really she’d any light on it, and I don’t really know if the two are linked. Thank you. John
Hi BlusemanI’ve had reflux issues for many years started with onset off AF. A lot to do with the use of Aspirin those days.
Post Ablation (although I did get COVID whilst in the hospital) 12 months ago my stomach problems went to a different level with oesophageal spasms and pain in my solar plexus constantly in and out of AF weekly. So much so I went private to see a Gastroenterologist who actually suggested it could be the AF giving me the stomach problems not the other way around. My stomach problems improved slightly over a 9 month period. When I went on Disopyramide my stomach problems improved significantly over a few days. Bowel movements not as loose and I’m eating things that I’ve been unable too in years.
Coincidentally my NHS referral some 10 months earlier came through and I discussed this with the Gastroenterologist who said it was entirely plausible with the anticholorgenic effects and there are certain receptors in Disopyramide that might be responsible for the improvement. He did say however that Buscopan has the same receptors should I have to discontinue with Disopyramide. My stomach isn’t perfect but I hardly ever use Gaviscon now and I’m only using 1 pantoprazole daily now Which I’ll wean myself off.
Hello again BigDunc, thank you for your reply, I’ve never suffered from reflux at all, and like you I did seek the help of a Private Gastroenterologist but unfortunately they didn’t help me really, and I’ve always had the thoughts that my AF is Triggered by stomach issues, but never managed to get any diagnosis for my stomach problems, so that’s where I am at the moment, but thanks again for taking the time to reply. John
BigDunc, you mentioned, "20 months ago I had to come off Flecainide following diagnosis of mild coronary heart disease in one of my arteries."
Why did you need to stop Flecainide following a diagnosis of mild coronary artery disease? Did your doctor state a connection between Flecainide use and coronary artery disease?
Hi MarkIronically I had consultation this week at EP surgery to discuss Disopyramide and results of Holter monitor.
It was my first consultation with this EP and she was brilliant and the first one to explain in detail Flecainide.
She explained that if you were to have a heart attack whilst on Flecainide it can cause other life threatening Arrythmia. She went onto say that some Doctors may have left me on Flecainide and it’s a decision made by each Doctor.
When I went on Flecainide some 15 years ago I had to have an angiogram before they would prescribe
BigDunc....I took Flecainide for about 10 years prior to my ablation for Atrial Fibrillation (AF) in 2011. Since my 2011 ablation, I have not been in AF. However, starting a year ago, I started have Premature Atrial Contractions (PAC) and Premature Ventricular Contractions (PVC) on a continual basis. Most recently my ECG's have shown only PAC's. A month ago, my cardiologist prescribed Flecainide and it has been very helpful in stopping the PAC's and keeping me in Normal Sinus Rhythm (NSR). I take one 50 mg tablet of Flecainide every 12 hours. I have a follow up appointment in 2 weeks. I'm assuming they will continue to monitor my progress with the Flecainide as I have also been previously diagnosed with mild coronary artery disease.
Thank you so much for your post. I am so similar to you. Although I have never had an ablation, I have paroxysmal vagal Afib, a low heart rate, exercise a lot (though I can't say exercise alone has put me back into sinus rhythm) I have used flecanaide for nearly 14 years with pretty good success, however I now find it's taking longer and longer for sinus rhythm to return and am currently awaiting a heart scan and if it's deteriorated I may ask if disopyramide is suitable. Do you still exercise, if so how are your energy levels as I have always had plenty of energy when not in Afib.
Still exercise every day usually walk around 5-10 miles and also high intensity workout on a cardio HIIT Machine 3-4 times a week and some cycling so energy levels quite good as the wife keeps reminding me that I’m 64.I am fortunate that when I’m in AF I can still exercise only thing I tend to suffer with is cramp but as you probably know tend urinate much more when in AF
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