Diagnosed with AF end of Nov . Went into AF week before Xmas, Went to cardiology clinic Jan 3rd still in AF ,17 days. Was told I could try Flecainide but was up to me no rush. Got the tablets then strangely I went into normal rhythm that evening so didn't take.
Had 10 days in normal rhythm then went back in AF and have been in now for 24 days.
My dilemma is I feel really well now. I am able to do all exercise and activities that I did before.
My blood pressure is within normal range. My resting heart rate has been a steady 64 for 2 weeks.
I'm currently taking 5mg Bisoprolol and 60mg Edoxaban
So feel I don't want to rock the boat by taking Flecainide and risking side effects when I feel so well.
Any advice would be appreciated. Also not sure how long you can be in AF before treatment doesn't work anymore. I am 62 year old female
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Evast
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I just joined and my first post here. I had a cardiologist that pretty much said "take a low-dose aspirin once a day and don't worry about your AFib". Well after a few years of that, I read a few books and that said "fire your cardiologist and hire an electrophysiologist" which I did immediately and wish I would have sooner. The book "The AFib Cure" by Dr. John Day is one I highly recommend to learn about your disease.
When you're in AFib, the #1 goal is to get back to NSR ASAP. If you had a run of 17 days and now 24 days, I would definitely take the Flec and hopefully it converts you. The longer you are in AFib, the more bad circuits it makes, and the easier it is for AFib to start. Getting back to NSR is very important, and if it makes you feel bad, that's better than being in persistent AFib.
I read a study where it said that AFib burden above 11% is where your stroke risk increases. Your weekly AFib burden is currently at 100%. I'm not trying to scare you because there are a lot of factors for AFib stroke, but this just another of the several reasons you want to get back to NSR.
I have paroxysmal AFib, and both my cardiologist and electrophysiologist said to call them if I ever had it run over 24 hours. Luckily mine have always been pretty short, and my longest run 16 hours, so I never had to call them to find out what they would have done.
I am taking the edoxaban to prevent strokes. When I emailed my cardiac nurse about it , he said it was fine if I was managing my symptoms with my current medication and probably safer than taking the Flecainide. I just worry about the long term implications of being in permanent AF and if my symptoms did worsen would it be too late for treatment
From the books I've read and what my EP says, rhythm control is more important than rate control. I have paroxysmal AF, and once I'm in AFib, I do everything I can to get back to NSR. Like you, I rarely have symptoms when in AF and have done a 40 mile bike gravel race while in it - first 2/3 wasn't bad but final 1/3 was tough. Even though I might feel normal (or close to it) while in AF, I've learned that it's best to get out of it ASAP!
I would highly suggest getting the "The AFib Cure" book by Dr. John Day which will explain what's going on with you, and want you need to do. I got the Kindle version and the following day made a call to my cardiologist asking her to refer me to the EP recommend by a friend. He got me on the right track including doing my ablation 10 days ago.
I could list all kinds of reasons why 100% AF burden is bad, but reading it from an EP would be much better, plus he'll give you a plan to attack it!
I was initially diagnosed with persistent AF I had 3 cardioversions which brilliantly kept me in NSR for a total of 3 years. As the cardioversions worked so well I was down to have an ablation but that was interrupted by covid and lockdown - I was due my ablation in the April and lockdown started on March 23rd. When it came time to do my ablation after lockdowns and cardio department closures due to lockdown all my scans were out of date so had to have new ones and it was found that my heart had remodelled itself so a further procedure would be unlikely to work. So now I am in persistent low rate AF resting heart rate mid to late 50's and when exercising keep my HR at under 120 where possible - though occasionally peak at over 130 and cope pretty well. Beta blockers, calcium channel blockers and any rate control medication makes me feel worse than AF ever did so only take apixaban and have had no problems. Though I do still wish that I had had that ablation as would still love to be in NSR and off medication.
Never had paroxysmal AF so have no personal experience but had a friend who had it for 30 years and it was awful. She was forever being rushed to A&E with heart rate in 200's. Tried to go on holiday a few times and twice was taken off the air craft or cruise ship because of AF so yes in that respect permanent AF is easier to deal with unless you have constant fatigue and breathlessness I suppose. I am not as good as I was without AF but wish I were which is why I wish I had been able to have the ablation as I was so much better in NSR. However, you do get used to it and as I get older it doesn't matter so much that I cant ride my bike either so far or so fast or do heavy gardening work and things like I used to - just have to find different ways of coping with not being younger and in NSR
AFib burden is the percent of time your heart is in AFib. There was a study that showed burden above 11% is where your stroke risk really increases if you're not on anticoagulants. The Apple Watch added an AFib burden feature last September which tell you every week what percentage your heart was in AFib.
I do find the AFib burden confusing. I’m not sure if there is a difference between those in paroxysmal A Fib having a higher burden, and those who are in long term persistent A Fib having a 100% burden.
I’m sure that I read somewhere that the dangerous points for stroke are going into and out of A Fib. Though I might well have that wrong.
My Apple Watch is saying that I have a 100% burden, and I still hate this despite having been persistent since October, with brief two day respite after an ablation. Yet it could work out that I’m stuck with it, really don’t know as no checks until 3 months. Just trusting that the anticoagulants work better for me than the antiarrhythmic drugs!
Not medically trained, so I can just give you a non professional impression. There are a number of lucky (that's a relative term) people who have asymptomatic afib and can carry about quite normally without any medications or interventions. You seem to fall into that category. Over time, you may go in and out of afib, but again probably without symptons.
If I were in your position, I would do nothing, with the exception of optionally taking a NOAC (blood thinner) depending on your risk factors.
Is there not a risk with permanent AF and with the heart working harder continuously, that the heart, like any muscle, becomes enlarged? I understand that an enlarged heart can lead to heart failure in later life. So although you can live with permanent AF, it may have longer term implications and therefore the preferred route is to try to minimise episodes? So often living with AF is a compromise and each needs to decide what their priorities are and therefore their own best compromise.
Well said, I was thinking the same. I can't recall reading anything much about the consequences of long term asymtomatic AF here but am interested as a family member has just been diagnosed with it.
Yes this is what happened to me during lockdown as I should have had my ablation the April after lockdown - after lockdown and the cardio centre being closed because of an outbreak of Covid by the time over 2 years after I should have had my ablation I had to have new tests and scans and my heart had enlarged so I was told that any further cardioversions or an ablation would not be offered as they were unlikely to work.
My experience was that with I think paroxysmal and later permanent A Flutter for several months, my LA enlarged. I still had the ablation. It was noted that after maybe 4-6 mths, after the ablation, the LA had reverted to normal size. It took a second ablation 18 mths later to resolve fully resolve the A Flutter
Interesting and detailed article from 2009. A lot has happened since and it would be great to see an updated article including the results of newer research. I understand that an enlarged heart often leads to Heart failure. Persistent episodes / permanent AF often leads to an enlarged heart. Therefore, in my mind, untreated AF increased the chance of heart failure?
I have only been on the Forum myself for 17 months, and had PAF a bit longer, although when AF was diagnosed officially 10 months ago, I also discovered (fortuitously) that I had a Vitamin D deficiency which I suspect also existed during the previous 2 years of AF events, with the last year averaging at one per month.
However, since I have raised my Vitamin D level by supplementation from 22 nmol/L to 112 nmol/L, I haven't had any AF for over 4 months now, and my heart rhythm definitely feels more solid and reliable.
Now I know 4 months is nothing in the scheme of AF, but my current experience, and current medical research about VitaminD, has convinced me that Vitamin D is vital for everyone's health.
"Unlike other types of observational studies, we have overcome some of the methodological obstacles. What is special about this new study is we were able to look at people with very low vitamin D concentrations and what would happen if their concentrations were a little bit higher. Most randomized controlled trials don't show much of an effect. That's because most people have sufficient concentrations. Ethically you can't do a trial of people with very low levels without treating them,"
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