Find the Right Flecainide Dose: I'm 49 year... - AF Association

AF Association
19,269 members23,370 posts

Find the Right Flecainide Dose

cpalmermn
cpalmermn

I'm 49 year old, otherwise healthy male with PAF. Longtime on/off endurance athlete, likely contributed to my afib. Still avid mountain biker - so spiking HR a lot when pedaling. Episodes have increased in frequency the last 3 years, duration stayed the same at around 3-4 hours. EP put me on 75mg twice daily, Afib has been knocked back a bit to mostly while sleeping, and episodes less than an hour. Overall, I've noticed zero side effects of the flec, it does keep my HR on the bike down a bit overall, and my fitness watch tells me my sleep is worse due to reduced HR variability, caused by the Flec. I am still getting crazy PACs, mostly when trying to sleep.

Wondering if others had minimal gains at first, and improvement by dosing up? I'm trying to evaluate the med route, before stepping up to ablate. Thanks!

20 Replies
oldestnewest
BobD
BobDVolunteer

That is a relatively low dose of flecainide to be honest. 100mg x2 would be common with a maxiumum do not exceed of 300mg per 24 hour period.

As I'm sure you will know, AF is a progressive condition so whilst flecainide does not lose efficacy progression may require different solutions. At your age so long as you have investigated all the life style changes recommended ? I would suggest ablation is a more effective way forward.

Just out of curiosity why are you hesitating over ablation? I am too & my wife tells me it’s completely irrational and why would I want a lifetime of drugs. I think my irrationality is that ablation might make things worse.

You may be interested in the link below in that case - Dr Mandrola is a conservative EP re ablation. The video is also quite enlightening although from 2015.

I started on Flec as a PIP - 300mg which usually converted me - then AF frequency increased so I took daily 2 x 100mg daily with extra 100mg if I had an episode. Worked for about 2 years until it had no affect.

Ablation is usually recommended sooner rather than later and for me - drugs did more harm than the ablation which gave me 3 years AF free. Know that ablation isn’t a cure.

Do you follow Dr John Mandrola - The Haywire Heart? Interesting blogger, cyclist.

drjohnm.org/2015/02/a-new-w...

cpalmermn
cpalmermn
in reply to CDreamer

Yep, I’ve read The Haywire Heart and Dr M’s blogs - he definitely raises some questions about ablations, and it’s what he does for a living. He’s also very good at debunking/interpreting certain medical trials - there’s obviously some that get funded by certain companies that may favor certain outcomes, etc. He really gets into how ablation medical trials are not as thorough as others.

in the same respect, my EP didn’t really seem to recommend ablation over meds. Really, we are only buying some time to be freed or lessoned of our Afib burden with any treatment. And yes, there are higher risks that come with ablation, vs the med route. So yeah, not sold at all...

Based on my experience, I suggest you discuss with medics increasing Flecainide to 200mgs/day and have a serious word with yourself on endurance/peak exercise and other lifestyle matters. The drug just buys time and many other things can reduce the risk of episodes; work on identifying your individual triggers.

On ablations, I sit on the fence....yes they do seem to be more successful for the Young like yourself but equally each year of delay by choosing drugs first bring new improvements, less complications and for some eventually they may become less invasive & destructive on the body. Hope something there helps.

Interesting, how we all seem react differently to the multifarious drug regimes in the treatment of AF. My take on it is that I'm not keen to be taking meds if a procedure can eliminate the need and that is also the view of my cardiologist. I found this paper acc.org/latest-in-cardiolog... which might be of interest given your sporting pursuits, but spoiler alert it seems in it's final analysis to sit firmly on the fence over wheather one should ablate or medicate. The experiment continues:-)

That paper definitely has some compelling info, thanks for sharing! The problem I have is it all seems to be fuzzy science at best - this or that might work, we don’t know for how long, so let’s start burning some heart tissue, see what happens...?!?!

Leeches?? Take it old school :-)

Exactly same boat as you similar age and same dose of flec, did sign up for ablation and then backed out but the debate continues in my head ! Wasnt convinced by the EP I saw which contributed to my reluctance, i think i would likely go for it if i could choose who and where it was done, ie one of the top guys with a low complication record !

Andy

cpalmermn
cpalmermn
in reply to Andyc934

I hear that. Think I’m at a pretty good Heart Center, tho my ablation would be with one of the newer, younger EPs...the Sr. guys have all contributed to studies and papers on ablation tech over the years, there’s good knowledge base there.

I was originally given 200mgs of Flecainide to use as a PIP, when that didn’t really work had 50mgs twice a day plus 5 of Nebivolol. Gave up on Flecainide and of course AF returned with a vengeance. Trying again with 100mgs twice a day with 1.25 of Nebivolol and 100mgs of Flecainide in reserve

My AF is asymptomatic, can be in AF with a heart rate of 68, but for the minute all good.

But at 76 the bike’s electric!!

cpalmermn
cpalmermn
in reply to Hylda

Any biking is good, and I hope I can still turn pedals on anything at 76!...I’ll be looking at eBikes sooner than later myself.

Hi cpalmermm

I was on the maximum dose of flechanide 100mg x 3 times a day. That was the only dose that stopped my af. It's not recommended to stay on that dose for long as it can cause other problems. I have had an ablation on 5th November and although I have had a couple of af attacks since am hoping it will be a success. Apparently it is quite normal to have af attacks up to 3 months after, although it feels quite disappointing. Af is a progressive illness as others have pointed out, so it is inevitable that an ablation is at the end of the tunnel. I was very apprehensive about the operation but it was not as bad as I thought and my advice is, Get it done. It will have to be done at some time. I am 70 yrs old and was ok so you should just take it in your stride.

Good luck for the future. Please let us know how you get on.

Regards Flyer.

Hidden
Hidden

Since you are so young, you might have success with this:

------------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??

I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

PS – there is a study backing up this data you can view at:

Cardiab.biomedcentral.com/articles/10.1186/1475-2840-7-28

Man, I know what you're feeling! I'm 52, male, mid-distance runner, low BMI. I had a stroke October last year, initially diagnosed as cryptogenic (i.e. no cause), then subsequently attributed to AF and then sinus node dysfunction. I'm on 200 mg of flecainide per day, which I tolerate reasonably well (as well as atenolol and apixaban). Like you, I'm not sold on ablation, especially because I'm a higher stroke risk. (How much higher? Nobody can say. No studies done on an ablation patient population where the patients have already had a stroke.) My view is that, at least at present, I can live with my cardiac problems; that's better than having another stroke. The risk of a stroke is low but the results are catastrophic. I live in Australia and, to his credit, my electrophysiologist (who has substantial US experience) is not pushing the ablation option for me. At times I feel quite ill with my AF and other arrhythmias. Also, I can't run fast any more and my physical activities have contracted radically. But I don't regret not having an ablation over the last twelve months. Like some of the other posters, I closely follow Dr Mandrola's twitter and blog. Check out his latest reports from the recent American Heart Association conference in Philadelphia, especially on angioplasty. This is not an AF treatment but it shows how cardiologists change their minds about what is best practice.

Also a mountain biker ! I found the flecinide really didn’t impact me but took a few months to work . I started my flecinide after a cardioversion . That lasted about 3 years , until I’ve had my 2nd cardio abalation which has resolved my afib. I had the same side effects , HR lower than expected and I found I did have to increase hydration on the bike or it would trigger AF. Looking back now , it gave me a few years leeway but ultimately the ablation resolved it for me ...

cpalmermn
cpalmermn
in reply to AndyDuk

Thanks for sharing! How long did 1st ablation resolve your Afib, and how long since your 2nd, if I might ask?

AndyDuk
AndyDuk
in reply to cpalmermn

So first ablation lasted about 10months for me but the 2nd ablation was they key and since I’ve had it , I’ve not had any episodes . That was about 17months ago now and I’m now coming off all medication..

PVI cryo-ablation fixed my long-standing PAF situation. The decision became easy upon realizing my quality of life was cr@p and that flecainide (and previously propafenone) was no longer doing the job. I had the procedure in August 2018 and have been completely AF-free since. I would not hesitate to have another ablation (touch up) should the need arise later on.

- Richard

You may also like...