Flacenide " Safe or Adios!": Hi folks I'm 5... - AF Association

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Flacenide " Safe or Adios!"

KevJenn
KevJenn

Hi folks

I'm 54. No heart problems other then Afib. According to doc for these reasons I can stabilize with Flaninide. I take 180 mg diltiazam. Black box warning so should I take the drug or not? I picture one pill and I go into arrest lol..seriously. 50 mg dose twice a day. Good experiences with it ?

Thanks for your time

Kevin

24 Replies
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Hidden
Hidden

Flecainide is considered a “ safe” drug, it is an antiarrhythmic drug, thus the black box warning. I only take it as needed now but used to take 100 mg twice daily with no issues or side effects. It worked well for me. Any drug that affects heart rhythm will have the black box warning. You just have to weigh bennefits vs risks. In my case, taking it daily bought me time to make some lifestyle changes like wt loss, diet, etc. After 6 mo with no a fib( and no other heart issues) I got to reduce it to as needed. It has been 14 mo since Ive had a fib. If the a fib came back on a regular basis, I would b ok with taking it daily again.

KevJenn
KevJenn in reply to Hidden

Appreciate the informationThank you. I don't like taking drugs at all but had two episodes in a week when I usually have them once every 3 months so

I have been taking Flecainide for about 28 years and have had no identifiable side effects. It is one of the most prescribed medications for AF.

It doesn’t suit everyone as we are all different but it is very effective. Make sure you follow your doctor’s advice.

Pete

KevJenn
KevJenn in reply to pottypete1

Thank you Pete.Appreciate the input!

Flecainide, if taken as a regular daily maintenance dose, should be taken with a betablocker or calcium channel blocker such as Diltiazem so if has been prescribed as a PiP you should be fine. I have taken it as a maintenance dose and as a PiP with Diltiazem with no problems.....

pottypete1
pottypete1 in reply to FlapJack

Although that is the perceived wisdom, some, like me, cannot take beta blockers due to heart block which in turn creates Bradycardia.

Pete

secondtry
secondtry in reply to pottypete1

I am another like Pete, just taking Flec with no company

KevJenn
KevJenn in reply to FlapJack

Thanks for replying! My pulse is running around 64 and my BP 110/70.All of these numbers are usually higher so I will assume the 180 mg Diltizam..Does Flec cause BP and pulse to go lower??

FlapJack
FlapJack in reply to KevJenn

Not as far as I know, Flecainide is a rhythm control drug

KevJenn
KevJenn in reply to FlapJack

Okay thanks!

secondtry
secondtry in reply to KevJenn

They say it is a rhythm only drug but I am pretty sure it knocked my pulse down from 60 to around 55

Hidden
Hidden

You might try cutting back on sugars and make sure you stay hydrated. See my 9 years of research below:

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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. 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??

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

KevJenn
KevJenn in reply to Hidden

I agree about sugar agitating afib. I try to take very little of it. I have celiac and really closely monitor what I eat. Appreciate you responding!

secondtry
secondtry in reply to Hidden

Since getting AF 5 + years ago I have focussed a lot more on food. IMHO it's much better to use the pure salts from Brittany and elsewhere as it is the commercial additives that do the harm, similarly gluten in your average supermarket bread is a problem but artisan spelt/sourdoughs can often be tolerated, lastly red meat gets a bad Press but OK if only pasture fed preferably organic, a much healthier product.

Hidden
Hidden in reply to Hidden

Sugar causes inflammation. Pretty much anything causing inflammation can be a trigger for AF. I recently discovered that EMFs/RF can cause inflammation. Turning off my wi-fi, especially at night, has been helpful.

Hidden
Hidden in reply to Hidden

Sugar CAN cause inflammation, but not every time you eat it. I suppose a LOT of sugar may cause inflammation, but I doubt if a couple oranges and an apple would, or a bowl of ice cream, or 3 bananas, or pretty much anything else that contains enough sugar to put me over my threshold of 60 grams a day - and that's enough sugar to trigger my Afib. Turning off your wi-fi may relax you, but I doubt it's the radio waves that do anything. But then again ... you never know!!

- Rick Hyer.

Hidden
Hidden in reply to Hidden

Hi Rick, interesting response. I've done the research, which is why I chose to write about it. I actually don't write about things I just make it up, which is what your response insinuates. Don't much care for that attitude and wonder if you are aware of how it comes across. On the topic of the radio waves, you're basically saying that you know my experience better than I do. So curious, really.

And you know, Rick, I don't know you at all, I'm sure you're a lovely person, I have no interest in getting into conflict...but...I just plain don't like the insinuation that you know better than I do what my experience is. And I choose to speak up about it.

Even if you don't care to dig into the research too much, at a minimum, you can find plenty of videos that show consultants testing various kinds of electrical pollution with meters and showing the before-and-after differences with some form of shielding. Rather compelling, IMHO. Plenty of research on it, too, in addition to my personal experience with the aspect of it that I chose to write about.

Best wishes to you.

Hidden
Hidden in reply to Hidden

You didn't read my last sentence.

- Rick Hyer.

Hidden
Hidden in reply to Hidden

Of course I read your last sentence.

I don’t sense any interest on your part in actually learning anything from the conversation, so won’t be responding to any further comments.

Hidden
Hidden

Hi Kevin, my cardio wanted me to take Flecainide prophylactically at a dose of 50 mg twice a day starting several months after my failed ablation. This proved to be too much for me, as did 25 mg twice per day. I take 100 mg as Pill-in-Pocket, only if I have an episode.

I have a really sensitive system, but I know I'm not the only one who has had awful side effects of Flecainide if I have too much in me. One side effect that is written about and that I have experienced is that it can actually cause arrhythmia. This has happened with me at times when I've taken it when I have not been in AF. I also had hallucinations, as have a few others here at the forum. There have been a few threads on Flec over the months. You might also try searching and reading through them.

My EP at the time suggested I take 150 mg at the outset of an episode so that the Flec could work faster. He had advised other patients to do that. In my case, it made the episode miserably longer!

I was not directed to take it with a beta blocker and actually went off the beta blocker I was left on for 5 years and found out on my own, thanks to the connection here at the forum to the videos of the wonderful Dr. Sanjay Gupta, of York Cardiology. So I don't agree with the advice that it must be taken with a beta blocker; best to discuss with your doc. I learned that with vagally-mediated AF, beta blockers aren't so great. That was my situation. I went off it, with my doc's blessing, and my HR has been just fine. The beta blockers had dragged me down and tired me out so much, so I was glad to be free of them.

What I do now with any med or supplement, if at all possible, is to take the lowest possible dose to test it out and see how my body reacts. Then gradually add more. You could possibly try 25 mg twice a day for a while, then go up to 50 mg. If you're concerned about it, I recommend that you discuss it with your doc.

Bottom line is that from all the various comments over time, it seems to have quite different impacts on folks. This is why going "low and slow" with dosage, as my naturopath recommends, tends to work well with me. It's really the only way to see how my body reacts to what I'm taking and the advice I'd share with anyone on Flec.

Hope that helps!

My cardio said take the dlitiazem and the Flec but don't take a beta blocker anymore so he must agree with you. Thank you for responding and providing your experiences. I am slowly losing the ability to do things I love...biking with my daughter...intimacy with my wife..anything that causes the heart to race because I am worried it will start up again...I have to overcome this somehow...

Hidden
Hidden in reply to KevJenn

I know, it can be so frustrating to be limited by AF. I've experienced that, too. And then figuring out how to communicate about it, such as how much to tell people, etc. Not always easy!

It's what keeps me on the trail of finding solutions.

'intimacy with wife' is not often discussed here, from my experience this is not a trigger but of course we are all different.

KevJenn
KevJenn in reply to secondtry

It was for me...seriously..Checked my hear rate right after and boom..Essentially based on what I am hearing anything that gets your heart moving can make it head to afib ..how depressing lol

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