11 nights AF free on 50mg Flecainide

[Davidv45runner]

Update here on my own circumstances so far .....

Ok , started on 50mg Flecainide 3rd April and went 11 nights without one of my usual episodes of AF.

Normal episode for me ,was that it would start usually from 9-12 pm when resting in bed / about to sleep / asleep - and last until I self cardio-verted in the morning on my exercise bike .

On the 7th night I noticed a very minor blip for a minute or so, yet last night about 3 am it was a proper breakthrough ... however it went away after about 3 hours.

Oddly though , when in bed early last night I could feel it building up - it just felt like it was going to happen -and i must add ,I was not anxious beforehand , and sure enough later on Mr Afib sneakily got me when I was asleep ( the barstard ).

After it cleared , that ( building up feeling) wasn’t there - it was like haha I got you , now I’m hiding until next time ...

My early conclusions are that the 50mg is just about working to keep AF at bay ( previous to taking medication , my episodes were every 3-7 days max ) - so I was happy to have got to 11 nights .

Will be sticking to the medication , yet I suspect if I am still having mini bouts that I will be moved up to 100mg .

So , two questions , one being - does anyone else get a feel for it building up ?

The second , what did your gp / cardio decide it was time to up your doseage ( or even reduce your doseage ) ?

[Hidden]

Prior to my first ablation I was taking a maintenance dose of Flecainide 2 x 50mg for almost a year and it stopped AF during that period. Of course we are all different, but it might be better for you if you try to accept that it’s working at the moment rather than worry about what’s best to do if shows signs of not because adding to your anxiety will not help. Easy to say I know, especially during difficult times, but at least you know the dose can be increased by your Doctor should it be necessary but never exceed 300 mg in any one 24 hour period.

[Davidv45runner in reply to Hidden]

Thanks for your reply flapjack .

As mentioned I wasn’t feeling anxious prior ,and I’m not worrying about if I need the dose to be increased as I fully accept what I have , and that what will be will be , my question is ——- at what points did a cardio / gp reccomend increasing dose age or perhaps even decreasing it ?

What did they see as the reasons for increasing / decreasing ..

[Bagrat in reply to Davidv45runner]

I took 100mg flecainide twice a day for about 7 years or so. Bisoprolol slowed my heart too much so told to stop it.I know many people are advised to take a beta blocker with flec but I haven't. About a couple of years back I started getting runs of tachycardia ( only around 100)and regular no AF since 2013. The tachy could come on at rest or just walking. Saw GP who added 1.25 bisoprolol, still dropped pulse to 40s so stopped and over a period of 2 months reduced am flec to 50 ( my episodes evening too.) Then ditto dor evening dose. Have been on 50 twice a day ever since.

[Davidv45runner in reply to Bagrat]

From my limited information ,what I gather is, that there needs to be a constant amount of flecainide within the body for it to be most effective .

Given all episodes occur at the same / similar time , and also thinking of the way the PIP method works , I wonder if it is worth weighting the medication so it is at its highest potentcy at the usual time of episodes .

I will ask my cardiologist this when I can get hold of them amongst other questions .

In case anyone tells me not to be a naughty boy and play around with my medication , I certainly won’t be doing that until I have asked the question .

And also I have accepted my situation.

I’m just very curious ,and like to know more from others who are likely to have had similar thoughts in the past or maybe even now .

[Bagrat in reply to Davidv45runner]

There are a few people on here who take uneven doses but most EPs aren't keen. That was the rationale behind me and GP reducing am dose first but it was for a limited time just till dose reduced

[Davidv45runner in reply to Bagrat]

Interesting .

To Uneven dosers :-

Does your method always work well for you , and are you aware of potential risks if any of doing what you do ?.. maybe you have been given a green light to take your dose age in this manner ?

[irene75359 in reply to Davidv45runner]

I take flecainide as a PIP, normally 200mg immediately an episode starts, and within two - three hours I am back in (albeit fast) NSR. I was first prescribed flecainide daily by an EP, which I took to control episodes every two - three months. I spoke to my GP, who has been enormously supportive and told him I was unhappy about taking the drug daily when my episodes weren't a regular occurrence. He agreed and advised me to take it as a PIP along with bisoprolol (which I have also weaned myself off).

So that is what I do now, last episode October 21st last year (who's counting!) If my episodes started getting more frequent and closer together I would go back on the daily dose originally prescribed but the way I see it right now I have been six months since last taking flecainide, and I am happy about that. Please note this isn't advice; I don't know of any risks apart from my GP telling me that it may be better to take the bisoprolol with the flecainide as a PIP as flecainide on its own can cause other arrhythmias.

Best of luck!

[secondtry in reply to Davidv45runner]

Hi David, your thoughts make good sense to me but not my cardiologist when I suggested that 5 years ago. He favoured a constant level not 'the rollercoaster' as he put it.

[Hidden]

Re building up feeling, yes I get that and it is almost always at night when Im trying to go to sleep. I use controlled deep breathing and I think that helps. I havent had any a fib for 2 yr but feel like Ive had close calls.

Re Flecainide, it is a great drug for me. I dont have any side effects. 50 mg is a low dose so even if they want to increase it to 100 mg , I wouldnt be concerned. Glad you are getting good results. Try and control the anxiety as I believe what we think and feel greatly influences our ticker💜

[Davidv45runner in reply to Hidden]

Thanks Hoski .

It’s still early days for me .

I do think that as my episodes were every 3-7 days , that i would be lucky if 50mg fully quelled the evil force , and although annoyed that the nightly counter has been restarted , I was pleased that I went well over 6 nights Afib free .. (something I hadn’t achieved for over 3 months ).

Instead of park run PBS it’s now Afib free PBS so mine is now 11 nights 😀.

No noticeable side effects either so this could be a great drug for me also .

The “ building up “ feeling — what really is it ? Besides being an evil force ...

I tell myself I’m not anxious and I genuinly don’t think I really am .

I physically notice the “ building up” then that may create some anxiety which may lead to a death spiral ,yet it’s not like I have anxiety that creates the building up .

[Hidden in reply to Davidv45runner]

Right, me too. I never am anxious when the buildup starts either. Reminds me of a plane revving up for takeoff.

[Paulbounce]

I was started on 50mg twice a day. This was increased to 100mg twice a day before my CV. It allows your body to get used to it and is a gradual build up.

So far it has worked wonders and kept afib at bay. We are all different but it does seem to work well for many on here.

Paul

[Davidv45runner in reply to Paulbounce]

Good to hear that Paul .

Whilst we can find all the negatives on here , it does need to be countered with the many positives .

[Aussie1959]

I was started on 50mg at night about 3 months ago-maybe a little change but my SVT starts as soon as i lie down, and keep going all night!!

[Davidv45runner in reply to Aussie1959]

Hi , I think you maybe messaged me before ?

Did you used to run a lot/ very athletic ?

I read one of your earlier posts about seeing a chiro — how did you get on ?

My episodes are always when lying down in bed .

I can be slouched in the couch before bed ,or sometimes for a hour or so in the afternoon ,but it doesn’t occur then ( and during that slouchy time my hr is very close to my lowest resting average ).

When lying in bed , i am in more of a flat position ( no surprise there )....

If I could strap myself into a vertical bed I may have been able to eliminate my Afib prior to starting flecainide .

At the moment I am interested a lot in posture /time of food as possible triggers.

When I can (post lockdown ) , I will be seeing a chiro for a general check up.

Even before Afib became a nuisance , I did think I had an imbalance during running ( my Garmin chest strap showed how uneven I am - especially at faster speeds ) ...

[secondtry in reply to Davidv45runner]

One extra pillow at night under your head, two on the left side to stop your turning onto that side, eat light 4 hours before bed, try a nasal strip and don't be too sedentary in the evening - all these worked for me. Good luck!

[secondtry]

I started on 50mg x2 per day and had 9 breakthroughs in just over a month, so was offered an ablation. I postponed that and instead requested 100mgs x2 Flecainide which has worked for 6 years. Whatever you do make sure it results in zero episodes as you don't want your heart to develop that habit.

[Davidv45runner in reply to secondtry]

Thanks for both posts :-

You say 9 breakthroughs in the one month — how many episodes were you having prior to taking 50mg flec ?

The being non sedentary in the evening I think would work .... a bit .

I think in my circumstance it would delay the onset of an episode by a few hours ( as it would be longer until HR is at resting ) .

I regret not seeing a cardiologist sooner as I think i let it go too far before starting on flec .(3-5-7 days between episodes )..

I’m thinking my heart has “ re modelled “ a bit , but also that if the episodes are drastically reduced it may “ re model “ in reverse ...

[secondtry in reply to Davidv45runner]

Before Flecainide I am not sure as not really aware there was a problem even after some serious ones, just thought I needed to calm down and it went back into NSR.

Re evening activities it is a question of trial and error, you may find some light housework is enough to see you through until the morning even though your heart rate will have dropped when you go to bed. As a runner you will have persistence, this is when you will need all of that, I have been continually trying things since first diagnosed and currently enjoy very good QOL.

[Flyer2820]

Hi David, I often knew when I was in afib, even when it was a mild attack. I haven't a clue why I knew, I just got used to knowing. As for when the cardiologist increased my dosage of flechanide, he did it when it became apparent that the lower dosage wasn't working. I ended up on 100mg three times a day, the maximum dose. It was the only amount that stopped the afib. We are not medically trained, you have to go off the experts. I would suggest however that you may need a stronger dose if you are still going in afib, but that is for the professionals to decide. I had an ablation last year on November 5th which seems to have worked for the time being. 4 months af free up to now, Yippee!!!!! Supposed to be seeing the EP in May to sign me off but I don't think that will happen with this cursed virus. Good luck and Stay safe.

Regards Flyer.

[Afbiff]

1 I don't get a feel for it building up.

2 I started on daily dose of Flecainide 50mg x 2. I had 4 break through episodes of AFib in 6 weeks and contacted my GP who upped daily dosage to 100mg Flec x 2 . AFib symptoms ceased but I felt dizzy and had double vision, GP after 2 weeks reduced Flec to 100mg am and 50 mg pm, so uneven dosage. Double vision much reduced and I hardly notice it at all now.

I've been symptom free for 7 months. Spoke to cardiologist last week and he endorsed GP's recommendations.

[Davidv45runner in reply to Afbiff]

Interesting again !

How many episodes did you have before using flec ?

[Afbiff in reply to Davidv45runner]

Infrequent episodes from 2015 onwards which became more frequent till I was having an episode nearly every day. Diagnosed with AFib 2019 after 7 day Holter monitor.

[Flyer2820 in reply to Afbiff]

Hi Afbiff.

It's interesting how it took 4 years for the doctor to diagnose you with afib. I started in early 2017 with dizzy, sweaty, hot and feeling sick effects. Was taken to the doctors and was immediately diagnosed with af. The ball was then rolling. My brother started with the symptoms and asked me what the symptoms were. After describing what he was getting I told him to go to the doctors as he was definitely having afib attacks. The doctor told him he was not but reluctantly changed his mind after he presented him with proof from a heart rate watch. Even though he has infrequent attacks, they are not taking it too seriously as I think as he has type 2 diabetes he should be on anticoagulants as a precaution. Some doctors are not clued up on afib and it's a bit of a postcode lottery which you get. Good luck for the future.

Regards Flyer.

[Afbiff in reply to Flyer2820]

Interesting Flyer, thanks - I could have done with a brother who has AFib and a heart rate watch (which I do have now.)

[Flyer2820 in reply to Afbiff]

Thank for your reply Afbiff, I wouldn't wish afib on anybody but as my brother has started with it I know that it can be hereditary or it runs in the family. My dad had it also. And I thought only noses ran in the our family.

[Opoho]

After last year’s trip to hospital, cardiologist prescribed 50mg flecainide am and 100 pm, also started Eliquis. Not a sign of any trouble since!