New to the community. I am 27 years old and have been diagonsed with PAF after having a second bout of AF on Thursday. Initial episode of AF happened at the end of September and lasted 16 hours, put back into Sinus Rhythm after being given Flecainide through IV. Have since had a follow up with Cardiologist and had an echo done which is all clear.
Second episode of AF happened on Thursday starting when I woke up at around 8am, was given 300mg of oral Flecainide in A&E but didn't put me back into SR within the recommended 6 hours wait time and was therefore admitted to hospital overnight. The AF persisted overnight but then flipped itself back into SR at around 8am the following morning so had been in AF for around 24 hours (maybe longer if I was in it when asleep to start with).
The Cardiologist on the rounds that morning has recommended putting me on 50mg twice daily of Flecainide. I am just wondering if anybody around my age has had experience of taking Flecainide on a daily basis and how it has affected you? I am conscious about the side effects and am wondering if it is worth being on after having just two episodes, albeit fairly long ones?
Thanks all,
Shaun
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ShaunK
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Hi Shaun. Sorry to have to welcome you here, but welcome anyway. Your story is not unlike mine though I started about 10 years later in age.
I have pretty much always been on Flecainide since I first started having AF. Obviously things can differ between people, but in the early years I was never quite sure if I wanted to be on it, or whether it was actually helping. After nearly 25 years experience I can see now that it was helping, and still does (even after I had an ablation, to reduce ectopics) but with AF being a multi-factorial problem, it was not alway clear what was happening, or that the drug was doing something.
What I found in my early years was that there were other things that could affect whether I actually had an episode, as much, or even more effective, than the drug. Certainly, flecainide never prevented ALL of my attacks, but it probably reduced the incidence. Other things which helped me, and which are becoming more recognised these days, were firstly to recognise the pattern of my AF, which for me tended to occur after meals, during the night, after exercise recovery as the heart slowed down again, and when I had gastric upsets. These are often described as "triggers", but the thing to recognise is that triggers aren't just something to avoid to stop you going into AF (though that's true) - they are also giving you vital information as to why your AF is occurring. The triggers I described in me are a classic pattern especially in younger, fitter, people with no heart "abnormality", and are what has become known as "vagally-mediated" symptoms. Now, this pattern might NOT be you, but it could be you. Your young age is one indicator from what you have written that definitely fits this pattern, the other slight indicator is conversion to SR at the end of a night, but then you went into AF at the same time too.
Since you are the one who is there at the time, not your doctors, and you can't be monitored by ECG all the time, what you can do is think back on what you were doing before you had the two attacks, and notice what happened if you get another.
Another thing is that doctors tend to say that increasing your heart rate will tend to tip you into AF, but that's a less complete story if your AF is vagally-mediated. I used to find that I could stop an episode by gently raising my heart rate by for example running up a short flight of stairs.
So it's a question of observing yourself as scientifically as you can and feeding this information back to your docs. It may be that you never get another AF episode, but you might.
I am sure the doctors have talked to you about things to avoid, but the classics are alcohol and caffeine. But it has been much better recognised in recent years that AF is at root an inflammatory condition affecting the heart tissue and the way it conducts electrical signals, and that lifestyle changes can assist in warding off AF. A great site to read through is Dr John Mandrola's site at drjohnm.org/atrial-fib/
There's so much on the internet about AF but go slowly, find good information and absorb it first.
I was told when I first had it not to worry about my AF. I was unsure about this because my docs didn't really seem to understand what was going on in me and gave vague answers (this was the 1990's). But now I think things have moved on and if you get good doctors who explain what is going on and are up to speed with modern thinking and practice, then you will find a way through this, and therefore if I say to you now not to worry, that's with a better chance of a good outcome than "back in my day".
Thank you very much for your reply and good information. I will observe if there are any triggers for it, both episodes have occurred (or I have noticed them happening) when I have woken up in the morning.
Thanks for the websites I am going to have a read of them.
Read my post to this young man. It’s as though I copied your reply. It is so comforting to know that over the years you too have discovered that certain triggers might be the way to help your Afib and treating that as a priority rather just concentrate on the reaction to these possible triggers. Thank you. Another human who thinks as I do! And confirms my thinking!
I am so impressed with your post that I gave it another like. Only to find it took my original like away! I suspect not many people know that as they say. Anyway well done.
Flecanide IV used to put me back into NSR too. Twice. It never worked after that. I found it odd that I was on Flecanide 50mg twice a day most of this year when it hadn't worked IV, and am back on it again. I am told it can make atrial flutter worse - and I had flutter ablation 8 weeks ago to that effect.
There was talk of me being on 50mg THREE times a day then 100mg three times a day until my recent episode of HR 130 in AF settled but fortunately I reverted.
The flecanide 50mg combined with 10-12.5mg bisoprolol is a heavy toll on my fatigue a lot of the time, worse with a newborn, but I'm coping.
Thanks Jedimasterlincoln, a new born baby is tiring at the best of times. The fatigue is a concern of mine, I am sure it affects everyone differently so I guess its worth trying and see how I get on.
Since your heart managed to return itself to a normal sinus rhythm, albeit after a probably unsettling 24 hours, I would be dis-inclined to start taking anti-arrythmics, given their potential side effects......you ddidn't mention any possible triggering events but if you can find one, or more, you might want to avoid them and see how you do.
I won’t give advise on your medications. But I would encourage you to be more aggressive to eliminate possible triggers for these episodes. There are several avenues to explore. For me it is getting my digestive track clear and moving. I knew there had to be a connection. I had about three episodes just after a meal over about a 2-1/2 year period. When I went to cardiologist he made no connection. However, I discovered there is an actual name Vagual Afib. (Vagus nerve) Also my friend says when she over eats it starts an episode. Gas has been mentioned as a trigger. Also, your thyroid can be a trigger. As young as you are, if all testing of your heart come back normal, you might sssume it is not your HEART, but another problem triggering your heart into AFIB ATTACK. Being educated about your body can’t be anything but helpful when understanding how and why and what to do about your situation. Read about your Vagus Nerve and about your thyroid as possible connections. You are right about Flecinide. Very strong med. my cousin’s doctor in California prescribed she take Flecanide only when an episode is coming. I can tell just before my heart begin to flutter. Can you? I only take as needed also. But if you don’t know when your are in Afib, then taking meds as directed should be your plan. I do not drink anything with caffeine . No alcohol, no smoking, and I try to walk away from stressful situations. I take a vitamin and mineral supplement. Good luck and good health comes with educating yourself. Lack of certain vitamins and/or minerals can be a trigger. Example Lack of potassium has been suggested as a trigger.
Yes, Lovethatlast the vagal and gastric connection is now (beginning to) make it into the mainstream. I've just posted this on another AFIB board....
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"I suffered for many years from gastric symptoms in addition to my AF. I was aware (due to this forum) of the link between the two via the vagal nerve connection between gut and heart, but the relationship was not well known about in the professions in spite of it being fairly well documented, and it really never figured in any therapeutic mode by my doctors.
Having had getting on for 15 years of freedom from full AF but with continued ectopics, occasionally bad, and continued vagal symptoms, my ectopics and gastric problems have both recently flared up so much that I have been losing a lot of sleep as my heart tries to jump out of my chest. Good job I'm not working any more as I would never have been able to carry on. My gastric problems include an industrial degree of belching, plus crazy ectos and often The Big Pee like I still had AF. Had I not had an ablation I would definitely have tipped back into AF.
I was getting heartily fed up with this and decided to consult Dr Google again. During this I happened by chance to across some videos on Youtube by Dr Sanjay Gupta, a UK Cardiologist in York, and as I watched these I realised he was describing my life - and clearly from the comments below the videos, many other people's too. He obviously has a special interest in this subject and an open mind, and his videos are really worth a watch.
Start with youtube.com/watch?v=zt4Cw-V... He talks about "palpitations" but it applies to other cardiac problems as well such as AF.
and the stats he quotes in the last one (concerning AF and hiatal hernia) are astounding. He's careful to distinguish between correlation and causation.
As far as the Gastro-Cardiac link he has not only publicised this on Youtube but in his videos he also references a number of papers which have clearly informed him about this area. Dr Gupta is clearly a discovery in himself, but the "discovery" to me is not that this link exists, or that the link is not really as controversial as some would make out, but that it has been well studied, mostly in the past 3 or so years, and has now found its way into the "RealWorld(TM)". So, a few links and papers (free full text papers):
I recommend the first two, although they are similar:
World Journal of Gastroenterology, 2014: ncbi.nlm.nih.gov/pmc/articl... "Atrial fibrillation in patients with gastroesophageal reflux disease: A comprehensive review"
Europace article: academic.oup.com/europace/a... "Atrial fibrillation and gastroesophageal reflux disease: the cardiogastric interaction"
Ironically the essentials of this appear to have been discovered around 1900 by Roemheld: en.wikipedia.org/wiki/Roemh...
And if you put this string into PubMed you get a bunch of hits; "Atrial fibrillation and gastroesophageal reflux disease" Look at the dates - all pretty much the last 3 or 4 years.
If you keep searching Pub Med in this vein you also find relationships between: AF and hiatus hernia, AF and H Pylori (a cause of gastric ulcers), AF and IBS, etc.
All of this does not prove that gastro problems cause AF (although some of these papers say that vagal hyperstimulation creates heterogeneity of the heart tissue, which is a known contributor to re-entry and thus AF), but there are clear theoretical and practical mechanisms that describe why this might happen (physical proximity, vagal interaction, inflammation, anxiety, PPIs making for hypomagnesemia). There is plenty of anecdotal and better evidence that sorting gastro problems improves the coincident heart issues, and there is also the strong point that treating gastro problems is pretty much risk free, particularly compared to the dangers of some anti-arryhthmic drugs with QT-lengthening properties, or amidodarone, etc.
For my own case I have started to treat my ectopics as primarily initiated by a gastric problem and have obtained a very fast turnaround in my health. I've not got to a final conclusion yet, but I am now very hopeful whereas a few weeks ago I was in despair again. My ectopics were as much of a bother to me as my AF was at its worst - possibly worse, since at least when AF hits and stays it eventually settles down and you can get some sleep! (8:00 mins in Dr Gupta's first video link above is exactly what's been happening to me)
Dr Gupta's other videos are equally fascinating, so check them out, and his Facebook page.
As another post on the purely vagal side of things, I have a paper titled "Vagal Atrial Fibrillation" by Yeh, Lemola and Stanley Nattel (a big name in AF) in Acta Cardiol Sin 2007;23:112. This goes into the fine detail of the electro-chemical mechanisms and most of it is way beyond me, but there's an interesting table:
Table 1. Characteristics of vagal-mediated and adrenergic-mediated AF
Vagal-mediated AF
More common
Predominance in man, age between 30 and 50 years
Patients without heart disease (long AF)
Preferentially noctural, during rest, after eating or drinking
Preceded by bradycardia
Lower ventricular response rate during AF
Aggravation by beta-blocker and/or digoxin
Adrenergic-mediated AF
Less common
No particular predominance
Often in patients with identified heart disease
During daytime or diurnal, provoked by exercise or emotional stress
Preceded by tachycardia
Higher ventricular response rate during AF
Benefit from beta-blocker and/or digoxin
The classic paper is Phillipe Coumel's description from 1992: (from Falk & Podrid)
“Experimental AF in animals has long been produced by manipulation of the autonomic nervous system and our observations indicate that in a subgroup of patients autonomic factors play a critical role.
In our experience, vagal arrhythmias are far more frequent than adrenergic AF in undiseased hearts, and remarkably, we have never observed evidence of vagally induced arrhythmias in diseased atria. […]
Some patients with paroxysmal AF may be difficult to classify, and Holter recordings often show that the adrenergic stimulation may be the best way to provoke the "rebound" vagal reaction that can precipitate AF. There is no evidence that the autonomic nervous system is fundamentally abnormal in patients with autonomically triggered AF, although vagal arrhythmias are predominantly observed in people displaying vagal hypertonicity (such as athletes and patients with digestive problems) and adrenergic arrhythmias most commonly occur in circumstances associated with a hyper-adrenergic state.
In favor of the concept that the disorder is primarily an electrical abnormality of the atrium that is exposed by autonomic stimuli is the observation that, on long-term follow-up, sustained "lone" AF may occur. This suggests that the preceding paroxysms of AF were triggered by autonomic mechanisms but required an abnormal electro-physiologic substrate. Studying the relationship between the vago-sympathetic balance and atrial tachyarrhythmias necessitates a complex analysis of heart rate variability. This tool is very promising and observations of variability can predict the clinical outcome of therapeutic intervention.
Careful analysis of heart rate variability in a patient with paroxysmal AF may not only aid in the appropriate use and prevent the misuse of beta-blockers but also can indicate which patients may benefit from atrial pacing. The necessity for atrial pacing in some resistant cases of paroxysmal AF does not lessen the importance of the autonomic nervous system as a triggering factor but merely underscores the complexity of these patients and the need to carefully individualize their treatment.”
I have a similar story to you. 29 one known bout of AF after being diagnosed with SVT two weeks prior. I am prescribed flecainide 50mg twice daily although I’ve found I only need it once in the morning with my other medications and one as and when I need it if I start to feel any other symptoms.
Hard to say 100% any side affects as I also take 240mg verapamil daily. But my SVT and Af symptoms are very well controlled and no further bouts that I am aware of.
Only thing that may be related was tiredness for the first couple weeks I couldn’t sleep but I dropped the evening dose and now sleep just fine.
For acid reflux, search for GERD and Dr. Myhill in Wales. She explains this and the reason it happens. Also, the mainstream medical solution often makes it worse.
Also, search on this site for "Cause of Atrial Fibrillation" where I explain my vagal AF is to do with my back. Finally, I don't have it anymore. It has taken a long time to fix but it appears that this has finally happened.
I suspect most of the vagal issues related to the stomach, AF when sleeping, etc affect the nerves in the back that control the heart. I think a lot more young people will experience AF because they are now and have been on devices, computer, tablet, phone, etc for a great part of their daily activities and this has compromised their back. Find a chiropractor who has extra training about nerves and who looks at the back from a health point of view and not just a "crack" and fix point of view and get this person to make adjustments that ensure your back is functioning optimally and you may find that your AF is gone or much less. No harm trying this. Most chiropractors do not know that they can influence the heart. I also suspect the need to urinate, when in AF is actually because the nerve that impacts the kidneys is located at T5, one of the locations that affects the heart.
These are just my observations after about a year and one half of chiropractic treatments. By paying attention to your heart, you may note that an adjustment has an impact. I am old and you are young so fixing your back may take a lot fewer treatments.
We've discussed this before, but I'm also convinced that posture is linked to af and am working on this myself (not through chiropractic - though it sounds very useful - but through reeducating myself and simply being aware of posture).
I can't see why the vagal nerve is any different from any other nerve in this respect. If I can stop the pain in my hand by releasing the pressure of my neck muscles on the nerve that connects to it, why can't I stop af through a similar approach?
The chiro can adjust the vertebrae which tells the adjacent muscles they need to change what they do and the brain gets involved to make the correction. It can take a few adjustments for this to happen. You can do some of this as well through posture/exercise but chiro treatments may fine tune and speed up the process so that is why it might be wise to add this possibility to the process.
I have a similar story to yourself. Would have been 29 with my first episode (sport induced) which corrected itself after a few hours. Took no medication and was fine for 2 years before next incident which I needed a cardio version to sort. Been on flecanide since then and did have to increase dose around a year later after another AFib attack. Other than the first event my AFib has always been on waking up. Had an ablation 2 weeks ago and hoping to review and come off meds at my follow up in December. I have to admit that I don’t really feel side effects from either flecanide or bisoprolol but who knows what long term effects there could be hence the ablation so that I can hopefully get off the meds and because in my view it was going to be a continued progression in medication otherwise. Obviously best to take advice from a EP but short term the medication hopefully provides relief from AF whilst you consider your long term approach.
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PAF well controlled till I got covid
87 years old but new to AFIB
Catheter Ablation at 28 years old
Flecainide, not curing PAF 
18 year old with AF
