Hello there. I’ve had PAF for approx 4 years. Also have CHD and normally feel well, with healthy lifestyle. Female aged 72. Had an increase in unprovoked episodes of PAF end of last year a cardio advised Flecainide. Stupidly or not I didn’t commence due to fear of side effects. More recently episodes had hardly occurred at all and felt (probably stupidly) hopeful that this would continue.Have just had an episode lasting 18 hours and although did not feel unwell was very scared and alone as no reason to call for advice. Dilemma is do I commence Flecainide or not? I’m worried about the worst effect occurring as live along way for from a hospital. On the other hand it may work well. The cardio was annoyed that I hadn’t taken it and may have struck me off! But I can get re referred as would need follow up after commencement. Help!
Indecision re Flecainide: Hello there... - Atrial Fibrillati...
Indecision re Flecainide
I doubt anyone on this forum can give you any better authoratitive advice than you've been given already. You seem to have made your choice. Just curious though .......... did you have any tests/ scans/whatever before being prescribed Flec in the first instance. Also, just curious ..... what side effects are you afraid of ?
I have been subject to scans etc and have an active prescription for Flec but haven't used it .......... yet! Mainly because my AF is highly controlled with a range of other drugs - the latest being Sotalol.
I’m on Bisoprolol and the usual statins and BP med. Because I was getting more frequent and longer episodes I saw cardio and he said tale Flecainide. Had the stress MRI and echo etc to check heart. All ok. Just scared of the ventricular fib and cardiac arrest that’s slightly possible. Also of feeling tired as feel well normally. But he said I can stop it.
If your echo scan was normal you'd be highly unlikely to develop Ventricular tachycardia. It IS possible to take Flecainide as a PiP but I think you should take medical advice on that. Talk to your GP on Monday. There may be instructions for dose etc from the original letter from cardiology.
I use Flecainide as a PiP and it's very effective for me. Pre ablation I was on 50mg X 2 and it mostly kept AF at bay.
He has prescribed it BD 50 mg. I see some take only 25mg and wonder whether to do that. The cardio will probably have struck me off and I will have to be re referred. Yes will speak to GP next week. Thanks.
My thoughts as a non medic. The lowest effective dose is 50mg. That said, for a whole post ablation I took 25 mg X 2 as a maintenance dose and my EP was fine with it because I was 67 and only 53 kilos. I'd say if taking it as a PiP 25mg might not hit the spot because the drug isn't already in your system. The other thing to consider - and I'm not sure if anyone has asked you this yet - is whether your cardiologist said to take the Flecainide AND the Bisoprolol, or Flecainide on its own. It is more usual to take Flecainide (if doing so regularly) to also be taking a rate controller e.g. BBs or similar such as a calcium channel blocker. That way there's less danger or the Flecainide kicking you off into.higher heart rates.
BTW it is not unusual to feel a bit weird when starting Flecainide. If I recall, I had headaches and felt a bit nauseous - sometimes like.my head was swimming. That was when I was uploading it as a daily medication. Weird rather than awful.
It’s understandable, if your AF episodes subsided, that you didn’t take Flecainide. It is scary when you live alone and taking new medication, but you can always ring 111 for help. What were you taking for the previous 4 years? Are you still taking that and did it not work? If AF starts to return frequently again, and is difficult to stop, then l would seriously consider taking the Flecainide and go back to see your Cardiologist. I don’t take this drug myself, but lots of people do, so must be quite safe. It’s your choice, so good luck with that and hope it all settles.
Taking Bisoprolol 5mg and h rate perfect normally. Anti coags of course. Just the af epododes scary and depressing in a way as you are aware that you’re heart’s not working normally. Just need to man up and take that tablet!
I do sympathise, I was prescribed Flecainide during a bad spell (hot summer) but didn’t take it because I thought I’d have side effects and it seemed ott to take a strong medication for something that happened infrequently and that I could cope with. As you’re taking bisoprolol and had all the tests you should be ok, probably safer than driving a car ☺️
Did you take it eventually?
No!
Please correct me but I guess that's at least partly because you don't really trust Flecainide. If that's so then who can blame you? Flecainide is known to be a Jekyll & Hyde drug that can cause serious bradycardia and QRS problems. Seems some cardiologists are quite eager to prescribe it. I wonder why. I think every other medication should be tried before Flecainide. Its just too powerful and unpredictable for my liking.
Since you ask, it’s because I previously took Propafenone - a drug in the same class plus a small beta blocking element - for many years before developing a fast arrhythmia and having an episode of coronary artery spasm which was, in effect, an MI. Then diltiazem was added, turning me into a zombie, and the combo also caused pauses in HB. So then I was told I would need a pacemaker to safely continue with the medication, or could try an ablation first, which I did, all good for two years then AF returned. Since then cardiologists have disagreed on whether Flecainide without a pacemaker is safe for me but agreed that another ablation probably wouldn’t work. I only take Diltiazem at 180mg (highest dose I am allowed) and now seem to have mostly slow AF. So when prescribed the smallest dose of Flecainide without a proper cardiology consultation I was reluctant to take a chance on it.
Sorry for the saga but you did ask and I needed to make it clear that my refusal was because of my individual case and not because of a general distrust of Flecainide.
No need to apologize. Many thanks for explaining your position. My own thinking on Flecainide results from reports I have read in cardiology journals and from patient experiences I have read here. Best wishes.
Exactly my reason for hesitance. To be fair he did offer me an ablation but again as episodes not frequent I declined for the time being. I was a nurse but not in this field and it seems that the decisions heart disease sufferers have to make are more difficult than in other health situations.
Only you can make that decision but, to me, it's pointless seeking advice from a medic and then ignoring that advice. I have had P/A/F now going on 20 odd years, have taken Flecanide amongst other drugs during that time and they have been ok bar one which, under advice I stopped taking and took an alternative. Good luck with making your decision.
You should take it, the beast AF will not got away and will get you by surprise often when you least expect it. I would say you also need an anticoagulant to limit the risk of a stroke. If it was me I would get referred (or pay for a private appointment with an EP)
Thanks. Yes am on anticoagulant. Had no hesitance re that being a retired nurse!
I took it for years and it certainly kept my AF under control. But finally the AF started breaking through and pace and ablate was advised at 79!
I have had afib for 3 years and been on flecainide for that time .. was on 50mg x 2 now on 100x2 daily. They do help a lot. . Cardiology recommended it and they know better than me, I’m also on statins as medical profession keep lowering the bench mark…anti coagulants..which are fine and strangely enough BP meds(again a lower bench mark’p) but..coincidence or not..since starting BP meds my afib has drastically reduced ? Who knows…but I’m not complaining.
Watch the York cardiologist on YouTube.hes very very reassuring because yes, it’s dam scary ..I had a similar episode before I was diagnosed…a good 18 hr one so took myself to A&e and they hooked me up and said yup that’s afib..but 3 weeks before I got meds! Please don’t be scared..millions of people have it..! Stress makes it worse,,easier said than done I know. Know your triggers altho the triggers I thought I had aren’t anymore🙄
Thanks yes. I have watched Sanjay Gupta and dream about having him as my consultant!
He’s fa b..a lovely voice. And talks in no nonsense English .
In our dreams lol
I resisted taking Flecanide too as I was pretty anti meds, but I did as a pip. Then die to increase in episodes was told to take twice a day. I decided to take once a day ( thought I knew best ) it didn’t work. So I took as prescribed and worked 100% . Have been on it 7 months with no side effects. Will try and wean off next month, which is 3 months post ablation.
I've had AF infrequently for 31 years say once every 5 years no drugs until 2022. Started taking Flec and B Blocker when i went into AF for a month.
Since start of February i've been on really low dose Flecanide and Metoprolol. My current dose is only 25mg Flecanide twice a day as advised by cardiologist as he's aware that too much Flecanide and metoprolol together brings my HR down into the 40's, i did start at 50mg, i've actually tweaked it down to 20mg twice and about 10mg Metoprolol. Seems to work for me. I have had no side effects. I also did my bloods and found i was quite low in Vit d3 magnesium and coq10 which i now supplement. I try to exercise every day which i believe helps with body and mind! Maybe ask cardiologist to start at 25mg twice daily and see how you go....
So, did the Flecainide eliminate the Afib? Thanks.
I actually had a cardioversion to get back in Sinus beginning of February. I’m really not sure whether one thing in particular is keeping me in sinus it could well be the combo of lifestyle changes, exercise and the Supplements I take with the drugs. Having said that I went 10 months last year AF free and only the first month on Metoprolol and Flecainide the rest drug free.
What are your lifestyle changes, exercise and supplements? Thanks.
my triggers were mainly too much alcohol and caffeine followed by exercise or rushing around afterwards, stress and lack of sleep may have been part of it too.
I pretty much have giving up alcohol and now only drink zero beers or may have a taste of my wife’s wine. Only decaf coffee. I’ve been supplementing Magnesium Taurate and Bisglycinate, VitD3 and Coq10. You must get bloods done first as you do not want to over do if your levels are ok. I read a book by James Nestor called Breath it’s a simple book but talks about how we can contribute to good health by understanding the importance of breathing through ones nose. I’ve elevated the head of my bed and sleep on right side to put less pressure on heart.
My diet is as it always was a Mediterranean diet no junk food and basically don’t eat food full of preservatives where possible.ive always exercised from a young age
I honestly don’t know if it’s one thing or a bunch of things I do but it seems to help. I’ve had this for 31 years averaging an episode once every 5 years up to 2022, though since then 3 episodes and 3 cardioversions so it appears to be progressing. I’m hoping the additional measures I’ve taken will slow the rate of progression until some of the new ablation systems are improved
Dr. Joel Wallach believes that Afib is caused by the Vagus Nerve being pinched by back problems, caused either by an accident or the shrinking of the cartlidge in your spine, etc. He recommends ways of rebuilding the cartlidge as one of the ways in curing Afib. Does any of that sound like something that might pertain to you? Thanks.
hard to say as mine started at 35 and caused by a night of drinking too much red wine into the early hours! then went for a run in the morning. AF straight away.! I do sometimes get ectopics from eating far too quickly and once this flipped into AF after a very stress filled morning. I’ve read this is Vagal driven. I will look him up and see what he says
I took it & for years it kept my AF manageable. As long as you don’t have any other heart problems it’s an ok drug to take
Do you still take it, and if not, why? Thanks.
I have taken Flecainide for several years and it has worked very well for me and I’m an 80 year old woman. At first I was prescribed it as a pip when it always ended episodes in a few hours but as they increased I took 50mg twice daily and as I still had episodes I then took 100mg twice daily which virtually put an end to episodes. As I feel it might be adding to my fatigue and there were indications that it might be a problem on the forum, when I forgot to take my first pill of the day without any problems I suggested I cut the morning dose to 50mg and keep the evening dose of 100mg and that seems to be working after a few days. I’m hoping it continues to do so. Hope my experience helps with your decision.
I had Paroxysmal AF for 4 years.Diagnosed in 2017.Only meds Adizem (Diliatazim) & anticoagulant.My episodes had settled to 2 in 18 months (1 through infection and one alcohol induced).One lasted a week and one 3 days.I always just did nothing & sat it out.High HR,dizzy , couldn't walk more than a few yards.Then I switched to persistent after COVID vaccination.Went persistent.Persistant 2.5 Years. Some bad days some good but AFib there all day & all night.Hr high but not as high.Just rest when my body told me.
I had a successful ablation Feb 23 .Had increasingly debilitating ectopics a few months ago.
Diliatazim stopped in may.
Some ectopics but not too many.
What are your symptoms? Is one episode of 18 hours worth taking medication that could give you side effects.Try to overcome the anxiety and wait for it to pass.
Just my experience & thoughts.
I took Flecainide for 12 years, without any side effects. It worked well to reduce AF episodes to one or two ten-minute episodes a year. After 12 years of Flecainide, the last 10 of which were at the maximum dose of 150mg x 2 a day, I was found to be in persistent asymptomatic AF. Flecainide was the best treatment I received in my 22 years of paroxysmal AF. I am prone to having side effects of other drugs, including two antibiotics, two bisphosphinates (alendronic acid and risedronate), all beta blockers, and Rivaroxaban, but Not Flecainide.
Meds affect everyone differently. I decided not to look at the side effects when I started Flec 7 weeks ago. The Flec is working I am managing the one side effect I have got.
Did the Flecainide eliminate the Afib? Thanks.
It has suppressed the PAF
I agree with Singwell. Explore the merits of the PiP approach if you are worried about taking Flecainide long term though it’s recommended for chronic use to reduce the frequency of AF attacks. American Cardiology article may be helpful.
I found flecainide a miracle drug and kept me going for years no side effects. However I now have permanent afib due to the covid vaccine snd twice getting covid itself so my consultant said as flecainide isn’t working any more I could stop them. I did stop for a month and last week felt so bad with my afib/tachycardia that as I couldn’t get hold of my consultant I took two flecainide (100mgs) snd doubled bisoprolol (2.5mgs) and within about less than a couple of hours felt so much better. I got hold of my GP next morning and told him snd he said if I felt better to resume 50mgs flecainide night snd morning and go back to bisoprolol normal 1.25 mgs he would write to my consultant explaining
So after all that yes I feel for me that it is a good drug. Not everyone is the same of course, but as your consultant said to take them I would if I were you
All the best……..Pat
I’m in a rather similar position. I took it for the first time and then for only one day last week when it worked very well.
However, my Apple ECG looked a bit wide and weird and I felt like I had palpitations without any ectopics showing on the ECG. I sent it to the specialist I see who phoned later to say “nothing to worry about”. I meant to ask if I could take it as and when needed but, typical of me, all questions evaporate from my mind when a specialist phones out of the blue.
I’ve read a lot about its safety and risks. It seems to be much safer than its reputation suggests. In your case, if you have some existing heart issues, I’m sure your doctor will have taken all these into account before prescribing.
Perhaps you could ask whether it would also be better to take it as needed (“pill in the pocket”)?
Steve
I'm new to taking flecainide, but I wanted to stop my AF events quicker (for obvious heart damage reasons) than my previous letting them continue to self-termination. So my last 2 events, about 3 months apart, were both terminated within 2 hours by a single PIP dose of 100mg. I would ask if such a PIP approach is suitable for you, rather than a daily dose.
Hello, hope you're doing OK today. Totally understand your reluctance re flecainide... I was exactly the same.
That was over 2 years ago and I finally gave in after I could clearly see the progression of the Afib burden (total time in Afib) going up.
Looking back, it's been a huge success. I had my annual EP checkup a couple of weeks ago and my Afib diary shows a 90%+ reduction in burden. And I'm still working on that 10%!
What I've learned is that it's (for me) a great drug but it needs respect (as you're giving it). So I have experimented with the dose and find that a small dose at the right time does the trick. I take 1 x 50mg at bedtime and that has ended 99% is any nighttime breakthroughs. And I take half a 50mg tablet at lunchtime. So, 75mg a day. Plus, importantly (as it helps prevent any other arrythmia), 1.25mg bisoprolol at those times too.
I'm cleared to 300mg a day and was on a regular 200mg but it wasn't any more effective for me.
I do many other things to keep Afib at bay but flecainide has been a fantastic help. We're all different so you'll need to experiment a bit.
Only cautionary tip is that if you're on flecainide and get a breakthrough episode, take a little more flec and bisoprolol and relax. Don't try to exercise your way out of it.
Good luck! ☺️
What are some of the other things you do to eliminate Afib? Thanks.
Hello
Keep tummy/belly weight /pressure on diaphragm low.
Eat sensibly (lots of fish, fibre, fruit and veg, and try to limit added sugar) and don't drink alcohol any more (except low alc beer). Keep body healthy as poss (anti inflammatory).
Exercise, but not too much. There's definitely a tipping point for me! Likewise inactivity is bad. But rest is essential. Good sleep.
If my heart is sensitised (Covid did that so do keep up with the vax) don't sleep on left side.
I take a statin and that's been really effective, have great blood lipid profile.
I take magnesium morning and night. Vit C at night. Vit D & K too (I'm in the not so sunny north, Scotland).
I have an anxiety med Loprazolam available if I need it as anxiety / stress is such a trigger.
I found the York cardiologist very helpful and reassuring. You'll find him easily on YT.
Good luck!
I have been on flecanide for 3yrs with Bisop 1.125 previous used flec for PIP
Took a while to get used to it but no afib for last 2yrs no side effects . Can feel tired on it at times but otherwise no major probs
Yes you should take flacainide twice a day a tablet of 50mg. See how you get on and ifyou get side effects stop. Also check your blood pressure and whether you have sleep apnoea as these can trigger PAF.Take a magnesium supplement daily and eat no later than 4 hours before going to bed.
If you have an episode of PAF take 300mg of flecainide and one metoprolol. If that doesn't stop it within 8-9 hours then go to Emergency.
Hi! I can’t believe how much alike we are. I’m female 73. I also have PAF that was first discovered on my Apple Watch approximately three years ago. I was advised to see an EP doctor which I did. He prescribed Flecainide and like you, I was afraid to take it due to the side affects. When I went back for my follow up appointment the doctor was upset that I didn’t take the Flecainide and told me I would have to find another doctor to treat me.
About three months ago, I started having problems with PAF and etopic beats which was worse than I’ve ever had. I found a new EP and he also wanted to put me on Flecainide. I didn’t go on it right away because I was still worried about the side effects but my etopics were getting so bad that I was desperate for help. I started the Flecainide and noticed that there was no relief to my PAF or etopics. In fact, it seemed like they were worse. I was also having dizziness, felt off balance, and having blurred vision. I called the doctor and he reduced my Flecainide from 100 mg down to 50 mg. It stopped the side effects, but did nothing for my PAF or my etopics. They continued to get worse. My doctor wants me to try another anti-arrhythmic but I’m not sure what to do right now. I will decide tomorrow when I go to the doctor and talk to him a little bit more about other options.
So to answer your question about taking Flecainide or not, I will have to be honest and tell you that it didn’t work for me. I’ve heard a lot of people on here that use it and have great results. So I guess the only thing you can do is try it and see if it helps.
Good luck to you!
Deb
I know there are many on this forum who swear by their drug regimens and find the relief they seek. I’m happy for them, even envy them.
But I have stopped looking to drugs as a solution to my arrhythmias. They cure nothing. They do not make me feel better; rather their side effects make me feel worse. Most importantly for me, most of them don’t work—they don’t keep me in NSR and tend to get me stuck in bradycardia, which is a true slog. (I’m talking about AAD’s, BB’s, CCB’s, not DOAC’s.)
I was recently given the choice between a CV and drugs. I chose a CV (#8) followed, I hope (it depends on testing), by an ablation (#3). A CV, while only a temporary fix, has in the past kept me in NSR and feeling good for a welcome period of time while I await an ablation.
An ablation holds the prospect of curing the substrate cause of the condition. Drugs do not. And drugs can make me feel worse than the arrhythmia itself. Amiodarone, while effective on my heart, was the worst, keeping me in soul-sapping bradycardia and messing with my kidneys, thyroid, eyesight, etc. No thanks.
It’s so much easier and cheaper just to put an arrhythmia patient on drugs. It’s no wonder that’s what doctors offer as the frontline treatment of choice.
But for really fixing the problem? The frontline treatment of choice according to the European Society of Cardiology is ablation. Other recent studies say the same thing: the sooner an ablation is done, the better. Second and third ablations may be necessary.
And if ablation ultimately fails, a pacemaker is the next consideration.
These are the choices I’m making. Others make different choices and do just fine.
Drugs are YOUR choice. If I had a doctor who got mad at me for my hesitancy in taking drugs and the reasoning behind it, I’d fire them and find one who will listen to me, educate me, and work in partnership with me. Fortunately, I have such an EP.
I think I should also add that I have a Watchman, which reduces my risk of stroke significantly and does free me up from a lifelong drug regimen. The Watchman has nothing to do with keeping me in NSR, however.
One last note: I did try drugs. You might want to do that, too, and find out for yourself if they are right for you. Nothing awful is going to happen if you follow your doctor’s advice. And nothing awful is going to happen if you decide against drugs (though staying on an anticoagulant) in favor of other approaches.
My experience with flecainide is that it usually helps with random episodes like what you are experiencing; however, once mine became full-time (permanent vs. paroxysmal), only an ablation did the trick (ah, blessed relief of normal sinus rhythm). Over a period of about 12 years, I have required two more ablations; and more recently experienced mostly nighttime episodes, so began taking just half a tablet before bed, as a precaution. However, because of what I attributed to stress, was getting a lot of irregular activity all hours of the night and day plus foot and ankle edema I'd never had before (that doesn't go away by morning). Someone told me flecainide could actually CAUSE arrhythmia, so I decided to stop it altogether. VOILA! Both arrhythmia and edema vanished. So, my takeaway is: use only as needed!
Hi, I started Flecanide about 2 months ago was already on bisoprolol but didn't like the side effects although I didn't realise I would still need to take that as well. After a month I had an ablation, I'd been on the waiting list for 18 months+, it was hard to decide as the Flecanide seemed to have halted all the issues but I wasn't sure how long for or whether it would be stopped at any point. I had no other negative side effects from it, 50mg bd and I'm due an echo next month, hoping that will be OK and then a review of meds 12 weeks after op. The biggest change was that after a couple of weeks I wasn't getting panicky at the least flutter, thinking, here we go again. Don't know if that help
Hi
The question is..
Is it more important to CONTROL the rhymn or
is it more important to CONTROL the Heart rate - over 100!
Also you need ECG, ECHO/CT SCAN and 24hr Heart Monitor to assess if your heart will be OK on an anti arrhymic med like Flec....
BBs did not do much for my heart rate.. 186 taking Metoprolol and the monitor showed pauses 2 secs at night. 156 Bisoprolol I was changed to - no pauses at night, still no control.
Enter private Heart Specialist who was interested .. always 47bpm avg at night.
So for 2.1/2 years remain stable
120/79. 60s Day. 47avg Night
I take meds which were decreased to:
120mg CCB Diltiazem AM for H/Rate Control.
2.5mg Bisoprolol PM for BP Control
110mg PRADAXA x twice
125 Synthroid daily 1 hr prior to food, 4 hrs till milk and iron etc
Because in 2019 Sept diagnosed with Left Frontal Lobe Clot Stroke with rapid, persistent AF and within 4 days Papillary thyroid cancer. (Thyroidectomy + 12 lymph nodes removed Feb 2020 2 affected).
I cannot have Cardioversion, Ablation or Anti-arrhymic meds as my heart structure shows abnormality.
You are right to feel aprehensive to such a risky med.
cherio JOY. 75. (NZ)
Make sre your levels are good on B12 (700), Potassium and Magnesium, Iron etc.
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