Persistent AF and Flecainide impact

[Tplongy]

Hi there,

Am new to this forum and found all the info very helpful, this is my first post . I know everyone is different and there are literally thousands of posts so excuse if I have missed what I was looking for...which is people who have persistent AF with no underlying case...

I was diagnosed with Persistent “cryptogenic” AF in Oct last year(bolt out of blue with no other health issues) which I was advised means no underlying cause (all new to me) after all bloods, x rays, echocardiogram.... all clear. A CV procedure in Nov failed, now Cardiologist put me on Flecainide (as well as Bisoprolol and Edoxaban,) potentially to help me get into normal sinus rhythm after another CV due in about May. Consultant did say there was slim chance Flec MAY put me back in normal rhythm without the CV but am not holding out much for this.

After 5 weeks on Flec...I find that my BP readings (3-4 a day) which have consistently previously since October recorded AF on EVERY reading since Oct, 23% of these readings show NO AF.

I am not getting too excited as I know these monitors can find it hard to read persistent AF, taking my manual pulse is practically impossible..(I know I am alive but my pulse is buried and would indicate otherwise.. even docs can’t find it😄

Anyway, long winded background to a question, has anyone else cardioverted to normal sinus rhythm on Flecainide and if so, after how long?

I am thinking of getting Kardia mobile so I can see if I am NOT in AF, rather than relying on random BP minor or pulse readings.....the posts I have seen seem to be about people who have intermittent AF, so I wondered if anyone out there with persistent AF with any feedback please?

Many thanks

[mjames1]

I controverted after about a week on afib, the day after started taking Flecainide. This is what the drug is designed to do. Definitely get yourself a Kardia, it is the home ekg standard. I tried all their models and recommend the Kardia 6L Model. Better connectivity and optionally you can take a six lead ekg, although you don't have to. Meanwhile, you can probably find your heart beat with an inexpensive Stethoscope held over your heart. And from what I know about blood pressure monitors, the fact that you're not getting the AF signal is promising. Just confirm with Kardia.

Jim

[Mightnot in reply to mjames1]

I’m new to this site. I’m always in AF constantly unless I have a cardio version and then I last about 12 weeks not in AF. If I got one of these devices you mention, and it tells me I’m in AF then is there anything you do? My doctors said you’re in af so knowing more details won’t help? I can tell when in af through pulse and drastic energy drops. I’d like to know what you do when you find out you’re in af?

[mjames1 in reply to Mightnot]

I would take the anti-arrhythmic flecainide which my ep prescribed to me. I don't know enough about your situation to advise. However, in general, anti-arrhythmics are often prescribed. And if they don't work, then there's ablation.

Jim

[Jafib53]

I had hyperthyroidism which sent me into persistent AF from October constantly until the end of February. I was then put on an anti-arrhythmia drug ( not Flecaainide, though) and after a week went back into NSR. But this also happened to coincide with my thyroid levels stabilizing so not sure if it was the drug or that which converted me, but yes I did fall back into NSR after 5 months of persistent AF.

[secondtry]

At the start of my journey I was put on a Flecainide drip, then the doctor came in and said as it didn't seem to be working he would have to 'shock' me. As I have vagally mediated PAF, this comment was enough to put me back into NSR.

[Tplongy in reply to secondtry]

Thanks Secondtry - sorry - as I said, new to all this - please advise what "vaguely mediated PAF' is ....😀

[secondtry in reply to Tplongy]

Some AFers find that the Vagus Nerve (runs from brain to heart to stomach) plays a key role in triggering their AF episodes; this can be started in the gastric area or the brain. This is called vagally mediated.

For others the Vagus Nerve is less sensitive so that they can't as easily identify the connection.

eg I have triggered an episode by drinking a cold drink quickly (gastric area) and revisiting a place where I have had a bad episode in the past (brain). Also, surprising using the same Vagus Nerve connections, I have stopped an episode with a cold drink gulped down and as in my first post above, a doctor threatening to 'shock' me has stopped an episode. So it can work both ways.

I hope this makes sense, there is quite a bit to learn but keep going and it will be worth it.

[Tplongy in reply to secondtry]

No kidding a lot to learn - never heard of the above! every day is a school day. 👍

[Dippy22 in reply to Tplongy]

Hi. Google the York Cardiologist. He has a lot of videos on utube that will help explain a lot for you. I’ve found him very useful.

PS I think my AF is vagal too. I shocked my heart out of AF the other week when I went to plump a sofa cushion and found a ruddy great big spider hiding under it! That worked a treat! 😀

[Tplongy in reply to Dippy22]

yes got his YouTube channel saved, very useful info

[Mightnot in reply to secondtry]

I’m an aF at the moment so are you suggesting that giving yourself a shock a surprise might get me out of AF. I’m always in AF at the moment and Doctors has just got to live with it.

[secondtry in reply to Mightnot]

Mmmm..if you have been in AF for hours/days maybe the 'cold drink' shock is a long shot. I try to act quickly when AF starts.

Last night I got a rare episode at 11.30pm for a number of accumulative reasons. I quickly acted: took my Flecainde daily dose early, cold drink, listened to slow heartbeat on YouTube and went for a steady slow walk for 1/2 mile. Back to bed but stayed sat up. One or more actions put me back in AF in less than 30 mins. I followed that up today by being extra careful in my diet & activities.

[Cricket24]

Very similar story to mine . I was diagnosed out of the blue with persistent AFib 6 years ago. Cardioversion successfully reverted and all ok for 3 years taking Bisopheral and Apixiban.

Then it flipped again into AFib. Started taking Flecainide with CV booked. After 4 weeks it worked and converted to sinus rhythm. Cardiologist advised to stay on Flecainide 100mg x2 daily, Bisopheral and Apixiban . Have been all ok again now for last 3 years.

I hope that it works for you too 🤞

[Tplongy in reply to Cricket24]

Hi Cricket, that's sounds really positive, thank you. Do you mind my asking how much Bisoprolol you on? I started on 5mg, increased to 7.5mg and then 10mg. Absolutely crippled with dizziness and lightheaded. Tried every version, splitting 50/50 morning and night, reduced to 7.5 and then 5mg - still same side effects (but heart right much higher), so am now on 7.5mg again, but dizziness is debilitating. Discussed potential for moving to channel blockers or other with Cardiologist. long term I would love to be medication free if I get back into normal sinus rhythm, but looks like you still on all tablets 3 years later?? eek.

[Cricket24 in reply to Tplongy]

Hi - that sounds horrible. I take 2.5mg every morning and have no ill effects at all . It was prescribed for eptopic beats and palpitations and has done the trick .

Yes looks like I will be on meds long term though. Cardiologist said he felt Flec was my best chance of staying in rythmn. Seeing him shortly for annual review and am intending to discuss with him again. I would like to reduce Flec to once a day as find evening dose a pain when out socially and on holiday. Think it is a 12 hour drug though.

None of this has affected my life at all - I still enjoy a drink regularly , play golf and travel. Maybe I am just lucky and as I get older things may change (64 now).

Good luck with it all and hope it works out for you .

Best wishes

Sue

[Tplongy in reply to Cricket24]

Thanks, interesting how people differ. Bisoprolol is the devils spawn for me. Considering the only symptom before diagnosis was breathlessness and fatigue (which I put down to daily life and work) - now post diagnosis, on a string of tablets - I now have a "reduced heart rate" but a list of totally debilitating side effects from the tablets that made me had to give up a job of 22 years, am like a vegetable at the moment with no life whatsoever😱 I guess I need to be thankful that I do at least have a life!

[Dippy22 in reply to Tplongy]

Careful! A lot of people can’t tolerate betablockers - drops the heart rate and/or blood pressure too low. Speak to your doc asap.

[Tplongy in reply to Dippy22]

thanks Dippy, had very long discussions with my cardiologist.. she didn’t want t change too many meds at once, ie only just added Flecainide, so willing to suffer the side effects for now, but they are grim

[DueNorth]

Hi. A few months ago I went into persistent (permanent?) AF after 16 yrs of paroxysmal. Have a monitored pacemaker which had shown episodes of heart rates above 200 bpm, so cardio upped bisoprolol to 5 mg/day. That has worked.He also suggested I might take an increased flecainide dose (2x100mg per day) for a week only, to see whether that might kick me into nsr. Then I must stop (as he knows there's a risk involved). If it works, reduce to normal 2x50mg. If it doesn't work, then stop altogether.

I haven't done that yet, as I've always been nervous about flecainide, but I will give it a go when I have people around me at home (I'm normally on my own). Having read your replies, I think I might stay on my lower dose of flec to see if that works over a longer timescale, as it seems to have done for some. Thanks for asking the question...

[Tapanac]

for me I found flecainide brilliant. Good luck x

[mav7]

Before investing in a Kardia, would recommend asking your doctor to wear a holter monitor for a continuous period which is the best way to determine your afib status. Key word is continuous monitoring which Kardia's do not provide.

You were likely given Flecainide to increase the possibility of a successful CV (since prior one failed) and as the doctor stated the possibility of conversion to NSR without the CV.

Can you share your heart rate which is really key ?

@Tplongy don't be a stranger in posting, Keep us updated. Best to you !

[Tplongy in reply to mav7]

Thanks Mav. Had 24 hour Holter Monitor back in November, avg heart rate during that 24 hours was circa 130 (after being on Bisoprolol for 6 weeks). Had circa 15 ECGs over last 6 months - all showing continuous AF.

Cardiologist diagnosed "persistent' AF. I am on currently 7.5 mg Biso, 100mg Flecainide (50 in the am and 50 in evening). My heart rate 'averages' circa 86 bpm over past 5 weeks on Flec.

[mav7 in reply to Tplongy]

Thanks for sharing

Also persistent, my heart rate is about same avg, 82-83. On Metoprolol.

God luck on the CV.

[Tplongy]

Thank you everyone for all your comments, much appreciated.

[DKBX]

yes flecainide can sometimes convert you but it is primarily to ensure a successful cardioversion in my experience (IME).

However, IME it caused left bundle branch block so I had to be taken off it. This allowed atypical flutter and Afib to return [my journey has been over 10 years with four ablations and more cardioversions and multiple drug regimens!].

Never give up. Learn all you can from reputable electrophysiologists. I’m now recovering from a fifth ablation that was quite aggressive by a “Top Gun” EP in a practice that has four EPs, lots of cardiologists, and plenty of NPs and PAs …Lovelace Heart Hospital in Albuquerque NM.

The advice there is to find a crackerjack outfit that you trust implicitly. Trust the experts not those of us with anecdotal IMEs!

[bassets]

I've always been fortunate enough to be able to get back to sinus using Flecainiide apart from two or three notable exceptions when I was sent to resus. My af has always been highly symptomatic.

[jd2004]

Buy a Kardia. I’ve used the cheaper model for seven years. Don’t get obsessive about it, daily or twice daily readings are enough. You can build up info for any medical appointments ( you can print results).

I have taken flecainide for seven years with a break post Covid when nothing was working. Cardiologist took me off it then restarted me on smaller dose after that. So far so good is all I can say.

[Tplongy]

thanks JD. You don’t say if it out u in normal sinus rhythm ?