Experimenting with fleccainide

[Davidv45runner]

Quick unedited Update as not posted for a while .

Ok so as a 45 year old runner swimmer - keep very fit type person ,I ended up on 1x50 AM ,2x50 PM.( flec ).

50 twice a day wasn’t quite enough .

However , through experimenting and a big loss of fitness I now only take 2x50 ( one at around 6pm , the other about 9pm before sleep ).

My afib is / was always at rest in bed.

I picked up Gardia lamblia from god knows where - and the result of this parasite infection was persistent diarrhoea for weeks on end then on and off for almost 3 months.

Only in the last month has this finally gone away ( I think pro biotics helped ).

This resulted in a major loss of fitness and a higher than usual resting heart rate .

This higher resting heart rate I think was actually good for my afib .

Accidentally at first I forgot to take the first tablet of 3 .... but no effect ... so then on purpose I changed to 2 in the evening and this worked fine .

I then went down to 1 or 2 , still with no effect .

I then went to 1 each night about 2 hours before sleep and this worked ok for about a week and then for the first time in 4-5 months I had a episode approx 4am (so I immediately took 2x50mg and within 2 hours it was gone ).

I now regularly take 2 per evening .

In the last month with more training ,my fitness has come back a lot and thus my RHR has dropped a bit ... and it was in the evening of a rest day from training that the RHR was much lower than of late ... that night was the recent episode of afib ..

So my circumstance seems to be ... if I start getting too fit again I will be back up to 3 flecainide soon ...

Better for me to be slightly ill it would seem .

What a ridiculous condition this afib is .

[Singwell]

Maybe think about it differently? There are more ways of thinking about fitness then cardio and muscle mass. It's more holistic and if you can maintain a good quality of life with good BP levels and HR variability surely that's more important? Just a 64 year old perspective...

[Drounding]

As you will know, taking Flecainide regularly be that 100x100 or 50x50 or 50x100 or any other dosage generally stops the onset of AFIB and at least reduces the occurance. Does the Flecainide affect your ability to excerise or is it that you just want to come off the drug?

I'm not a very fit person but I've never found that Flecainide affects my activities. The beta blocker (such as Bisoprolol) that is usually prescibed with Felcainide however can often affect activitiy abilities.

I suggest you discuss this with your Cardio and see what options would be best for your symptoms and lifestyle, be that drugs or an ablation perhaps. I wouldn't suggest changing the dosage at all without consulatation first.

[Coco51]

Well that certainly confounds all the conventional wisdom! I was told to take care to space the doses regularly 12 hours apart to keep a regular level of the drug in the bloodstream. Once in a particularly bad phase I was told 100 3xday at 8 hr intervals - which worked for the AF although I felt dreadful.

You say that when you changed doses things were ok for a few weeks..

Well I think it can take a few weeks for Flec to leave your system. I know my EP doesn't agree and says it's quicker. But I tried to cut my dose from 100 2x per day. I went down to 50 2xper day. Ok for 3 weeks then suddenly started to get AF everyday. When I was finally put back on the higher dose, things improved but it took 2 weeks to properly settle to very infrequent AF.

Like you I have a slow HR and get a lot of vagal AF after food or in the evening/night. But not always. So you're right. AF seems to obey no rules.

[secondtry in reply to Coco51]

That's good to know Coco thank you for posting. I hope after 7 yrs, maybe 2021, I can start reducing my 2x100mgs Flecainide but your experience needs to be considered. May I ask before reducing your dosage did you make Lifestyle changes (eg. changed diet, exercise, supplements, stress)?

[Coco51 in reply to secondtry]

Hi again. In answer to your question, before reducing my dose of Flecainide I didn't make lifestyle changes as I felt pretty fit. I had had practically no AF for 9 months. I was then 67 and always walked, and still walk, 4 or 5 miles a day rain or shine - have dog! - sometimes more. I had already given up alcohol and caffeine when the persistent AF started ( I was 65 but had suffered paroxysmal AF for 10 years before that). I was eating a healthy diet with very little red meat, plenty of fish, chicken, good oils, vegetables and vegetarian food, with desserts and sugar only very rarely. BMI under 25.

I had also seen a psychologist over several months about stress and learned self hypnosis. I still do that and it is brilliant. So all this was in place before reducing the dose of Flecainide. Anyway it meant that when the AF came back I dealt with it much better.

You talk about your fitness. I don't know how much vigorous exercise you do, but interestingly I have read that a lot of athletes get AF. My friend who was an Olympic oarswoman now has AF. She is one of the fittest people I know - goes to the gym, runs, does weights etc. And yet that hasn't stopped her getting AF (and AF has not stopped her exercising!)

So it's all a bit mysterious. One thing that's pretty certain is the Giardia you have been suffering won't have helped. All infections cause inflammation and that affects the heart. My current wonky period of AF started when I got a wasp sting.

So good luck with the experiment and keep us posted.

[secondtry in reply to Coco51]

Great info thanks. Very similar to myself so maybe will postpone weaning off my 200mgs pd Flec. People who overtrain risk AF despite having no other risk factors.

[Coco51 in reply to secondtry]

Just realised it was Daverunner who had Giardia not you. I thought when you replied that you were him. Glad it made sense though🤔 Apologies!

[ruskin10]

Hi, there seems to be no set way with AF. It is quite a powerful drug so I would consult cardiology before Making any decisions about dosage, sometimes you end up really messing thing up (personal experience with other medication). Best wishes

[Horse57]

Be very careful with flecainide. It is not a drug to play around with. When it has side effects it can be very serious. The least amount the better for sure. I personally would not increase or decrease without a serious discussion with my EP. Just my thoughts

[secondtry]

AF can it seems be caused by a number of factors, hence why it is so difficult to stop. However, often there can be a lead cause & other contributory issues. In your case, I would say it is your exercise regime, as has been experienced by many professional athletes. Sorry I know that's what you don't want to hear but I would start there first, take a break from your normal regime, you can always build it back later when you know more. More lifestyle changes I would also recommend as an insurance policy.

I used to love tennis, running, downhill & cross country skiing but now all I do is x2 30 mins daily walks with poles. I miss it yes but I don't miss the AF misery and have had excellent QOL for a couple of years now on just x2 100mgs Flecainide. Good luck!

[Davidv45runner]

Secondtry , I did take a break and then I was forced into a longer break by giardia ( diarrhoea) which lasted for months .

This was akin to what other athletes have found successful ( ie a period of de training).

I have now resumed training again but at a lower level ( never empty the tank or go flat out anymore ).

My RHR is 3-5 BPM higher than it used to be at my peak fitness .

( this may seem minimal to most but that is quite an increase ).

I predict this will start to return to prior levels in a month or so ... at this point it will be interesting to see if I need to increase back up to 3x50 or more .

However ,

2x50 seems adequate for now .

As it is always at night in bed it’s very manageable for now .

The symptoms when it occurs are barely noticeable ( I check my watch then I check my pulse ).

As everyone says “ it’s a powerful drug “

So given that logic , why take 3 when 2 will do ?

I understand most wont want to try this , and I’m no expert at all .

I expect that I may soon ( next year or so need 3 then 4 and eventually up to the max 6 ... )so if I see this trend rising I will cut back a lot and opt for an ablation .

It does not effect my ability to exercise either .

From approx 9pm to 6pm the following day I take no tablets and never have an episode at those times ( non bed rest time ).

If I have an episode during the day then I think that’s a whole new ball game ... as then vulnerable to attack at any time ,I think I would be straight up to 4( 2 am / 2 pm ) or spread evenly through the day.

If you have any doubts, obviously don’t copy me .