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Afib breakthroughs on flecainide

Posted by Zb3 
Zb3
Afib breakthroughs on flecainide
March 11, 2019 03:33PM
Hi there

Was diagnosed with Afib 6 months ago. 28 years old. On betablocker and 200mg of flec daily. Flec was working perfectly and no Afib unless I forgot a dose. A month ago had some Afib working out at the gym despite being on flec and had to stop. Yesterday I started doing cardio as per the cardiologists request. Was fine during but afterwards was in Afib for an hour - not constant but the flec seemed to be fighting it and I would get 20 seconds every 2 minutes for the entire hour.

Woke up this morning and I was afib and have been on and off for the last 45 minutes now - no exercise.

This is really scaring me. Is this a sign flec is failing and it’s only gonna get worse? Should I go back to the cardiologist for an ablation or what sad smiley

Thanks for the help
Re: Afib breakthroughs on flecainide
March 11, 2019 07:01PM
You're very young to have afib, and starting you off on flecainide wasn't the greatest decision in my opinion. You could live another 60 years, and I guarantee flecainide isn't going to keep working that long. Parking a young person like yourself on antiarrhythmic drugs that will eventually fail just isn't a good solution.

You said it was prescribed by a cardiologist. Does that mean they're not an electrophysiologist (EP)? If so, don't go back. Find a very good EP and book a consultation. Cardiologists have only one way of treating afib and that's with drugs. They don't do ablations, and most likely that's the best course of action for you.
ron
Re: Afib breakthroughs on flecainide
March 11, 2019 07:25PM
Zb3, I took flec for a long time, first as a pill in pocket and then on a daily basis. I was allowed to take up to 300mg in a 24 hour period. When I was on the maintenance dose, I took it a couple hours before bed, I usually got my afib at nite. So, if I took 200 at bedtime and afib came, I took another 100 being sure I didn't exceed the total I could take in 24 hours. I never took the full amount unless I needed it.

If you have not done so already, consider adjusting the time you take the flec to a couple hours before you usually get your afib. Also, talk to your Doctor about increasing the amount you take to a higher daily amount (only if needed). Make sure you run any changes with flec by your Doctor first.

Of course you are following the recommendations found on this board for Magnesium, Potassium and Taurine, right ?

At 28, with afib just starting, I would make an effort to get my life in order with good diet, supplements and habits before rushing to an ablation. If that didn't work, and your afib burden increases, I would get down to business and find the very best, most experienced Doctor I could find to do the procedure.

One last thing, I found it very helpful having a written record in a single book from the very start of my afib problems. I could look up each time I had afib, how long it lasted, HR, and what I did to get rid of it. I also kept track of what medicines, foods and supplements I had taken as well as each and every Doctor and Hospital visit.

Good luck with managing this, ronH
Zb3
Re: Afib breakthroughs on flecainide
March 12, 2019 12:49AM
@carey - do you think it would be beneficial if I try drop it to 100mg of flec a day so then I have more room to use it over time. Though if I’m getting breakthroughs I guess that means it’s stopping working already. Which sucks because some people are fine on it for many years. It was a cardiologist. I don’t think there are many electrophysiologists in my country (only 4-5m population), but in 3 years my health insurance will cover my Afib so I’m hoping I can make the medicine last till then and then get an ablation with someone experienced. I suppose I’ll continue with cardio even though it seemed to cause the Afib. Need to do some for heart health.


@ron, I used to get Afib first thing in the morning and for like 4-5 hours everyday. Since starting the flec I’ve had it appear a handful of times which were al in the last few weeks. Which makes me fearful that the flec isn’t working anymore. I currently take the flec before bed.

I supplement with magnesium but not potassium or taurine. My diet has over 1000mg of potassium per day tho. I follow a Mediterranean diet and also have some meal replacement shakes that are filled with micronutrients. I will look into taurine. Is there a specific amount per day of each supplement you take that you find effective? I also take fish oil, multivitamin, coq10 and l’arginine along with the magnesium. Have a lot of olive oil and nuts and about 8-10 servings of fruit and veg a day. I lift
Weights 5 times a week but until now haven’t done any cardiovascular exercise in a number of years. Have started running stairs last week but that caused Afib so not sure what to do now, especially as the cardiologist was telling me to do a couple hours cardio a week.

Especially as I’m so young I figure since I’ve got this young I’m going to be in a terrible state before I’m 60 so I need to try manage it the best I can. I will start recording my symptoms and health information in my phones notepad. That’s a good suggestion. Thank you.
Re: Afib breakthroughs on flecainide
March 12, 2019 05:56AM
Carey is correct here. The Flecanide isn't going to last forever and you are awfully young to be starting on an ARR drug. I was younger than you when first diagnosed with afib but mine was very infrequent so my afib burden wasn't that high. But it did end up progressing to persistent over time.

Try making some lifestyle adjustments. You said that you were doing cardio. Maybe you, like many of us here, are doing too much which can also lead to Afib. Definitely find yourself a good EP. I had a cardiologist help manage my afib in its earliest stages, a couple unsustained episodes a year. But when it got worse he immediately referred me to an EP.



Edited 1 time(s). Last edit at 03/12/2019 08:25AM by rocketritch.
Zb3
Re: Afib breakthroughs on flecainide
March 12, 2019 06:31AM
So what do I do? How do I stop things becoming permanent sad smiley this is all very depressing. Do I just continue on my flec, supplement accordingly and eat well and then when flec fails have an ablation? What did you do to manage things



Edited 1 time(s). Last edit at 03/12/2019 06:32AM by Zb3.
Re: Afib breakthroughs on flecainide
March 12, 2019 07:23AM
Is there long release flecainide available in your country ? If it is, it might be worth a try...
Re: Afib breakthroughs on flecainide
March 12, 2019 08:35AM
Quote
Zb3
So what do I do? How do I stop things becoming permanent sad smiley this is all very depressing. Do I just continue on my flec, supplement accordingly and eat well and then when flec fails have an ablation? What did you do to manage things

I would seek out a good EP right away. Have you tried any supplements to help reduce your episodes. Are you solely on Flecanide, or are you on a Beta blocker as well? Are your episodes directly associated with cardio?

A consistent trigger for me was recovery from a hard effort while cycling. I learned that if I slowly brought my HR down I was less likely to have an episode. Oddly enough, once I had an episode while exercising and once I converted, I could continue to exercise without fear of having another. Probably not a recommended way to deal with it though.
Re: Afib breakthroughs on flecainide
March 12, 2019 10:14AM
Quote
Zb3
@carey - do you think it would be beneficial if I try drop it to 100mg of flec a day so then I have more room to use it over time. Though if I’m getting breakthroughs I guess that means it’s stopping working already.

No, I don't think that will help. All reducing the dosage will do is make afib episodes more likely. But the fact that you've had breakthroughs doesn't mean it's stopped working. It just means it's an imperfect drug and it may not be the right drug for you.

What country are you in?
Re: Afib breakthroughs on flecainide
March 12, 2019 10:41AM
Quote
Zb3
So what do I do? How do I stop things becoming permanent sad smiley this is all very depressing. Do I just continue on my flec, supplement accordingly and eat well and then when flec fails have an ablation? What did you do to manage things

I'm sorry that you have to deal with this at such a young age. I hate it at my age and I'm old enough to be your mother!

I have had one episode in late November that lasted about 9 or so hours and I converted while in the ER. At the time I was prescribed a beta blocker, a calcium channel blocker and Eliquis. After a visit with the EP a couple of weeks ago, he decided that I did not need to take the Eliquis. My "risk factor" is HBP. I stress alot about Afib and I know it does not help.

A couple of weeks ago I walked outside of church during the sermon because I thought I was going into Afib. It was *something* but did not turn into a full blown episode. Anyway, while pacing in the foyer of the church, I ran into a friend who I had not seen in years. I was telling her about my Afib and she told me that her son had it. He was 18 at the time the episodes started and they thought he was faking to get out of playing basketball winking smiley. Took him to doctor - long story short - he was diagnosed with Afib and ended up having an ablation. I don't know all the details - how many episodes he had, etc., but apparently he had the ablation at a children's hospital (Atlanta area). That was 10 years ago and he has had no trouble since.

I tell you this because it may be that younger people fare better with procedures like this that those later in life. I don't know. I wish you the best and hope you can find some resolution, because believe me, this Afib stuff stinks.
Re: Afib breakthroughs on flecainide
March 12, 2019 11:24AM
Welcome Zb3,

You’ve gotten some very good advice above, yet inspite of having AFIB show up in your life at your young age, don’t just assume you are doomed to a miserable prognosis by age 60!

We strongly our specific guidelines incorporating the best of life-style risk reducing methods (RFM) along with partnering with an experienced and respected EP to help you manage the condition in the early phases, so long as your AFIB burden continues to lessen significantly and durably so from those management efforts.

‘If’, or as it turns out to be the case in the vast majority of Afibbers long-term experience, ‘when’ all the RFM in the world eventually fails to fully corral your AFIB such that it becomes a very rare and briefly appearing nusance in your life (if it occurs at all any longer) ... then it’s time to connect with the most experienced ablationist you can possibly arrange for yourself in order the begin, and complete, your expert ablation process. If you follow such a path Zb3, your odds of being totally free of all atrial tachycardia (AT) much earlier in your life than 60 years old is highly likely, if not almost a slam dunk!

The key is not overly procrastinating and dragging out for many years when to seek out that expert-level ablation EP, well after it has become patently clear that your AT is only progressing and is not under strict control at all. When, and if, your AFIB starts to progress inspite of any of the more conservative measures like the broad range of RFM and electrolyte repletion strategies, etc. supported on our site, you will save yourself a lot of unnecesssary stress and likely added structural remodeling in most folks hearts, by becoming proactive and cutting the head off the dragon once and for all, and thus put all this business in the rear view mirror for good!

This overall process has been the most consistently reliable path toward truly durable freedom from all atrial arrhythmias with the least overall time and effort required that so many of our readers have embraced and benefited from greatly! It is such a blessing not to wake up each day wondering if the beast is about to pounce once again.

Plus, for those who are relatively new to all of this business, or who have not yet dedicated themselves to at least 6 months to a year of ernest effort at improving RFM and other ‘Self-Health’ steps we recommend, by following these more natural means early on (including drug therapy when needed), they will confirm for themselves whether or not they were ever a realistic candidate for achieving life-long suppression of their AT without possibly needing an ablation. It is truly a ‘win-win’ process Zb3 when embraced and followed through with, and thus your’s is not at all a dire long-term prognosis even for an Afibber starting out at the young age of 28!

You have every reason to be very hopeful and reassured!

Cheers!
Shannon



Edited 1 time(s). Last edit at 03/12/2019 11:41AM by Shannon.
Zb3
Re: Afib breakthroughs on flecainide
March 13, 2019 05:32AM
@pompon I am on flecainide 200mg controlled release so I assume that’s the same thing.


@rocket good idea. I finished my workout off with a relatively hard circuit and Afib came 15 mins later when I was showering. I think I will warm down now as you suggest. I have only had a few breakthroughs since being on flec so it’s hard to ascertain a pattern yet. I was just scared as flec had been working perfectly and I thought it was a sign of it failing already.

@cArey well that sucks. Kind of annoyed that I was started off on 200mg. Would’ve preferred the PIP technique or just 100mg. Then I wouldn’t need a beta blocker as well every day.

@kate sorry to hear about your Afib. I think it’s scary for us all regardless of our age. Well if an ablation is a cure for some that does give some hope. To be completely cured and for it to never come back would be amazing.


@shannon thank you for the kind words. I still have a lot to learn about Afib and what strategies to employ. I have magnesium and eat a meditteranean based diet but will add potassium and taurine as well. Even though flec seems to work for the most part I do feel sluggish a lot more than I used to and sometimes feel a bit dizzy when I stand up or a bit breathless but I suppose I’m stuck with it now. I am otherwise very healthy so don’t have the common issues of being overweight or diabetes or
Hugh blood pressure. I just don’t get why people don’t all get an ablation straight away rather than trying to control the Afib naturally.
Re: Afib breakthroughs on flecainide
March 13, 2019 07:57AM
"I just don’t get why people don’t all get an ablation straight away rather than trying to control the Afib naturally."

In years past, Ablations were much less successfull, And putting an Ablation off in the future, gives the technology time to advance.
Relatively Asymptomatic AFIB patients often don't feel a sense of urgency to Ablate, especially is they self-convert back to NSR within several days.
AFIB doesn't always progress negatively as fast as you may have been led to believe.
Ablations even if successfull are not a permanent solution. After 5 or possibly 10 years you would likely need to get another Ablation, not to mention the risk Complications.

One of the main factors in managing your AFIB for now would be utilizing Rate-Control if needed. What is your HR typically when you are in AFIB?
Zb3
Re: Afib breakthroughs on flecainide
March 13, 2019 03:36PM
Well that sucks... I thought if the ablation was successful you would be cured forever. Prior to being on flec I did a 24 hour holter and that had my Afib at a bit over 200bpm. None of the break through dive had on flec have been that fast quivering type. My heart beat wasn’t fast at all just every few beats it would have a long pause and I would feel faint and dizzy and then a few faster beats to catch up but likely no more then 120bpm on average
Re: Afib breakthroughs on flecainide
March 13, 2019 04:27PM
Quote
The Anti-Fib

Relatively Asymptomatic AFIB patients often don't feel a sense of urgency to Ablate, especially is they self-convert back to NSR within several days.

What is "relatively asymtomatic"? When I had my episode, I knew the second it started and it caused great anxiety. It went on for several hours and, I don't know whether it was the Afib or my anxiety, I was short of breath and lightheaded after awhile.

In any case, what do most people do during an episode? I know wait it out, but how do you keep yourself calm?
Re: Afib breakthroughs on flecainide
March 13, 2019 06:49PM
Asymtomatic = you don't know your in afib. Or it does not affect your life/lifestyle.
Re: Afib breakthroughs on flecainide
March 13, 2019 07:03PM
Quote
Zb3
Well that sucks... I thought if the ablation was successful you would be cured forever.

I think Anti-Fib is maybe being a little overly pessimistic. A well done ablation will never fail. The lesions formed are permanent and can't heal over. However, afib is a progressive disease so new sources of ectopy can form later that are outside the isolated areas. That's how you'd see afib return years later. Not because the ablation failed but because new sources of afib developed. I think the take away message from that is lifestyle still matters even after a successful ablation. You want to avoid those things that might encourage the development of atrial stretch, fibrosis and new sources of ectopy to minimize the chances of your afib progressing. The good news is a repeat procedure should be much simpler and less involved than the index procedure. There's really no way to predict if or when that might happen. There are people walking around out there who are afib-free and more than 10 years post-ablation. Ablations didn't really become common until the early 2000s, so only time will tell how long they can last.
Zb3
Re: Afib breakthroughs on flecainide
March 13, 2019 08:37PM
@carey that certainly makes sense. Thank you for sharing your knowledge. Though I was diagnosed at 27. I don’t drink, never smoked (not even a puff), eat well and do resistance training 5 days a week. Not overweight etc. but still diagnosed at 27. Seems bad luck is a big factor too. But certainly best to do all one can to try mitigate the risk of it coming back.

@kateshadow I agree. How could you be in Afib and not know?! Maybe some people don’t feel dizzy and out of breath but surely they must feel
The heart beating funny? Unless it’s possible to be in Afib whilst having a normal pulse but I doubt that
Re: Afib breakthroughs on flecainide
March 13, 2019 09:52PM
Quote
Zb3
I don’t drink, never smoked (not even a puff), eat well and do resistance training 5 days a week. Not overweight etc.

That's the right course to take, but I would suggest avoiding lifting heavy. Heavy weight training probably puts more strain on the atria than almost any other sport.
Re: Afib breakthroughs on flecainide
March 13, 2019 10:52PM
I wonder if Arnold Schwarzenegger had AF he must have done a lot of heavy lifting.

liz



Edited 1 time(s). Last edit at 03/13/2019 10:56PM by Elizabeth.
Joe
Re: Afib breakthroughs on flecainide
March 14, 2019 02:04AM
Hasn't he got quite a few health problem for his age?
Re: Afib breakthroughs on flecainide
March 14, 2019 03:09AM
Quote
Elizabeth
I wonder if Arnold Schwarzenegger had AF he must have done a lot of heavy lifting.

liz

I am not sure where I read it, but I have seen multiple references to Arnold and other Bodybuilders developing Valve problems along with AFIB.

I have weight lifted for 37 years now, I can tell the strain on my Cardiovascular system when I do a Compound Weightlifting exercise. The way to lift for People with AFIB, is too do Isolation exercises that target individual body parts, and not take as long of a break or maybe even no breaks in-between sets. A Trigger for PAC's, and thus AFIB, can be the Hearts inability to decelerate properly after completing a Heavy Compound exercise. This is in addition to the Atrial Stretch that can occur from putting acute high loads on the Heart.
Re: Afib breakthroughs on flecainide
March 14, 2019 09:38AM
Quote
The Anti-Fib

I have weight lifted for 37 years now, I can tell the strain on my Cardiovascular system when I do a Compound Weightlifting exercise. The way to lift for People with AFIB, is too do Isolation exercises that target individual body parts, and not take as long of a break or maybe even no breaks in-between sets. A Trigger for PAC's, and thus AFIB, can be the Hearts inability to decelerate properly after completing a Heavy Compound exercise. This is in addition to the Atrial Stretch that can occur from putting acute high loads on the Heart.

This is interesting. I am also a long time lifter. I rest between sets a minute or more until my breathing and HR returns to normal range. Also do some stretching in the interim. It is true there are some PAC's during that time but they go away before I start the next set. I avoid pushing to failure, which for me creates a much larger number of PAC's and a much longer recovery time until they go away. If I went through with little or no breaks, it would be more aerobic and endurance, which is not what I want. My problems occur if I over do but many hours later and usually overnight. I had a lot of improvement in ectopics and AFIB when I cut back on both the intensity and duration of weights workouts, and also running. But I still emphasize compound movements along with body weight stuff.
Re: Afib breakthroughs on flecainide
March 14, 2019 11:02AM
zb3, I'd echo that you need to get to a good EP. The cardiologist I had told me to 'live with it' - that was about 8 or so years ago . I got an ablation and for me at any rate it has been successful ever since. Not to say it will always be so but the EP who did the ablation (Conor Barrett at Mass General) seemed to think there was a good chance it would last a long time. AF sucks to live with -I think Shannon referred to it as 'the beast' and that is spot on.
Re: Afib breakthroughs on flecainide
March 14, 2019 12:05PM
Quote
safib
I have weight lifted for 37 years now, I can tell the strain on my Cardiovascular system when .

Interesting. When I was first diagnosed I was heavy into body building. I didn't transition to endurance sports until later on. .
Re: Afib breakthroughs on flecainide
March 15, 2019 08:45AM
Quote
The Anti-Fib

I wonder if Arnold Schwarzenegger had AF he must have done a lot of heavy lifting.

liz

I am not sure where I read it, but I have seen multiple references to Arnold and other Bodybuilders developing Valve problems along with AFIB.

<[www.afibbers.org]
Quote
Shannon
Just a quick note, Dr Natale just cautions Afibbers not to do very heavy bench and overhead presses above body weight ... The vast majority of folks can still engage in highly strenuous and effective exercise programs, and stay in excellent shape, after an expert ablation process.

He means the caution mainly for extreme body-builder type weight lifters and is from his frequent observation of both the need for open heart valve replacement surgery AND a super high incident of ongoing AFIB in serious competition level body builders later in life.... i.e. Arnold Schwarzenegger who has had valve surgery and AFIB, also the father of modern body building Joe Weider who died at a ripe old age of heart failure arising from complications from prior multiple valve replacements. Also, a significant number of owners and trainers of serious heavy iron gyms up and down the west coast, and in other parts of the US, have found a similar later life fate years after retiring from active competition.

When you really strain so hard and so often that you really have to grunt doing weight work, especially overhead and bench presses, it is like putting a constricting band around one's thicker-walled muscular ventricles such that this tight restrictive contraction of the ventricle's forces the two thinner-walled atria to balloon out and stretch over time which can often then lead, long-term, to leaky poorly seated cardiac valves and which also makes one especially AFIB prone due to the often dilated atria.

The vast majority of folks, though, after a successful expert AFIB ablation process, can engage in a very vigorous exercise program without having a problem just by taking a few modest precautions and applying good common sense.
Re: Afib breakthroughs on flecainide
March 15, 2019 03:21PM
George:

I didn't know that Arnold S. had those kinds of problems, thank you for your post. You are a wealth of info.

L
Zb3
Re: Afib breakthroughs on flecainide
March 15, 2019 09:15PM
Well that really sucks then. I have done heavy bench press ever since I was 17 years old, and would regularly lift 250-300 pounds. So everything else is fine to do aside from bench and overhead press? Going to lose a lot of strength doing bench press at just my body weight. I guess life really is unfair. I had started to limit bench to 80% of my 1rm but man, as low as body weight it is then sad smiley
Re: Afib breakthroughs on flecainide
March 15, 2019 09:40PM
Arnold S. had a Watchman device implanted.

[www.massdevice.com]

Arnold Schwarzenegger spoke about his experience being implanted with Boston Scientific‘s (NYSE:BSX) Watchman left atrial appendage closure device, experience with aortic repair, the medical industry and more on stage at the annual Transcatheter Cardiovascular Therapeutics conference in San Franscisco.

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Liz



Edited 1 time(s). Last edit at 03/15/2019 09:44PM by Elizabeth.
Re: Afib breakthroughs on flecainide
March 16, 2019 10:54PM
Quote
Zb3
Well that really sucks then. I have done heavy bench press ever since I was 17 years old, and would regularly lift 250-300 pounds. So everything else is fine to do aside from bench and overhead press? Going to lose a lot of strength doing bench press at just my body weight. I guess life really is unfair. I had started to limit bench to 80% of my 1rm but man, as low as body weight it is then sad smiley

I can relate to your frustration. Learning to detrain was hard for me. Over time, I've learned subjectively what my limits are. I also have a subjective sense of how much is too much. In my case, when activity starts to "look like" endurance activity, I terminate it. For example, Tuesday skied with friends. Tuesday night it snowed a lot of heavy wet snow, which continued Wednesday. Was skiing off piste with two friends, one who is 35 years my junior, the other 5 years younger. Around 1:30 PM, I realized my heart was acting like I was doing continuous endurance exercise. I'd also intentionally fasted since Monday. I decided to bag the off piste runs for the day. This did not lead to afib. I ate normally Wednesday night and skied hard Thursday. In fact my two ski partners quit at 2 PM as they were beat and done for the day. I felt good, and my heart was recovering well after each run. Hence i hit the steeps by myself for another couple of hours.

For training, I look for "minimal effective dose." I do a lot of body weight exercises. If I'm on weights, I do a "super slow to failure" as the weight required is much lighter. I know that exercise tends to have a "U" or "J" shaped curve, so I encourage myself not to push the right side of that curve - even though my nature is to push it as hard as I can.

Last weekend I was at a medical conference (I'm not a doc, but was with many). This week I joined them in the after conference skiing. One doc, a vascular surgeon from Melbourne, told me 95% of her male patients were cyclists. I didn't realize that heavy duty cycling could cause vascular issues. Point here is that pushing as hard as possible can cause issues. This quote from from Hans Larsen's (the founder of afibbers.org) first book comes to mind from Philippe Coumel, MD, FESC (the late Dr. Coumel was a french EP and researcher who did a lot of work on autonomic nervous system afib triggers).

Quote
Philippe Coumel, MD, FESC
I usually tell my patients it all depends on them and that the answer lies in their own observations. This is, in particular, the case for sports, whether on an occasional basis or with the major issue of professional training; excessive training is harmful when it exaggeratedly modifies the ANS balance beyond the sympathetic and parasympathetic physiological values. It is a major mistake to think that the man in the street must be as trained and fit as the professional sportsman.Any common sense driver knows that if he wants to make his car last he must avoid handling it as a rally or Formula I driver.
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