The latest Flecainide adventure : Hello all... - AF Association

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The latest Flecainide adventure

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Hello all, never a dull moment with AF, it seems.

In the last week or so, I’ve been having more episodes. Seems like my heart is more easily triggered, but then my trusty 100mg Flecainide followed by 30c Arnica 15 minutes later ends it within a couple of hours.

Having switched docs, I feel less stress overall.

Then yesterday...I taught my college class. They are lovely students, doing well, and yet I’m wondering if it’s become too much for me to teach large classes. I was exhausted by the end of it, knew I was in AF by the time I got home.

Took 100mg Flec+ Arnica at around 7pm, but my heart had suddenly flipped back to NSR just as I took it. I figured I’d be good with the Flec, but then was jolted awake at 2am by a hallucination and couldn’t sleep for hours. Woke in a strong AF episode, exhausted, had a good cry from the frustration of this recent chapter, had breakfast and flipped back to NSR.

What I’ve seen in recent months is that if I have too much Flec in my system, it’ll cause or intensify an episode and/or will gift me with a wild and wooly hallucination. I think last night’s experience is related to the episodes coming closer together.

I’m due to see my EP on Tuesday for a follow up. In Sept, he didn’t recommend a 3rd ablation. Funny how I’d emailed him before going to bed, suggesting I skip the appt cause I’ve been feeling better and am not eager to have another ablation. Changed my mind about the appt. Will chat about Flec, though he’s never been one to dig into the nuances of dosage. I’m curious to see if he’s still doesn’t recommend another ablation. I’m not convinced it would be worth it.

Not sure what to do about Flec. Maybe wait a bit longer before taking when an episode starts. It’s intriguing that my heart is more readily flipping back into NSR.

My new cardio encourages excercise and watching nutrition- she is the first doctor to even mention those words!! The others have only ever talked about pills & procedures. Her approach reminds me of Dr. Gupta in a way. We’ll see what unfolds. I was in touch before last night’s fun and she recommended I keep doing what I’ve been doing for a while to see how it goes.

So there we are. Exhausted but grateful for NSR and a bit baffled. Just felt like sharing here with you who understand the craziness of AF.

Will sign off with an absurd experience with AF & jury duty.

I get summoned for jury duty every year and have been excused on the basis of being self-employed, as not working would create financial hardship.

Last week I asked to be excused for that reason, along with the impact of AF on my finances this year, the possibility of maybe having an ablation, and needing to keep stress down.

Well, you can probably guess that they denied it. That was a head-scratcher.

So I called and happened to get a lovely young woman who shared a laugh with me over the absurdity of it all and then excused me. She then told me I can be excused permanently with a doctor’s note. Ha!

Funny how it worked out better to be denied the first time. Go figure.

18 Replies
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Well, it should not have been so but your post made me laugh.I can see you are not letting much of this get you down....and a good cry never hurt any one .Do have a quietish Christmas as getting too excited never helps us afibbers.

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in reply to 10gingercats

Happy to have provided a laugh, 10gingercats! I find that I'm better able to laugh at the absurdity of it all lately - when I'm not in a Flecainide-induced slump!

I happened to listen to the episode of the TED Talk Radio Hour podcast called "Painfully Funny" the other day and found it moving and inspiring. Basically, it's about using humor in the face of pain and difficulty.

npr.org/programs/ted-radio-...

It did help me laugh about the jury duty thing.

Well sounds like vagal AF to me and you need to make some lifestyle changes urgently plus more advice from a medic that you trust on Flecainide. As you probably know given your long AF experience, we mainly all here just pass on our personal experience, apart from some very experienced contributors who know the subject inside out.

So my experience.... my cardio does not favour the 'roller coaster' PIP method of taking Flec but rather the right daily dose. Supplements PIP are trickier I would think as some will have the same roller coaster impact on the heart but no doubt NOT advisable to take these on a daily basis e.g. your arnica, although I know nothing about that one.

In your shoes my action list would be .....get your Red Cell magnesium and CoQ10 levels tested, will cost you around £100, blood taken locally and posted to BioLab London and aim with Mg Taurate (actually I take an Mg compound with several more beneficial ingredients) & Co Q10 to move into the upper quartile of the normal range for both or even higher for the latter. Discuss with medics taking a regular Flec dose, 100mgs/day may be enough but it took 200mgs/day to stop my AF. Lastly, diet triggers need to be identified and try eating light in the evening before 7pm and/or 4hrs+ before you go to bed.

Parting shot; Changing your lifestyle and habits can be liberating if approached with a definite purpose and positive outlook, well at least that was my outcome.

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in reply to secondtry

My goodness, secondtry, so many assumptions about me in your comment.

That I’ve not thought about or done anything about my lifestyle....

That I’ve never discussed Flecainide with my docs ....

That I live in England....

That you know better than I (or my cardio!) what dosage of any medication is best for me...never having met me.

Kind of amazing to be hit with all of that from a perfect stranger.

200mg/day of Flec? For me?😂.

secondtry
secondtry
in reply to Hidden

Apologies if it came over the wrong way, it was meant to relate principally to my experience for you to pick over and hopefully find something useful.

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in reply to secondtry

I found the comment that daily flecainide is better than the PiP method interesting, but have been reluctant to go along this route.

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in reply to Hidden

More on my Flec adventures....in the interest of sharing how there is not one-size-fits-all approach to using it.

After taking 100 mg as PIP with success, my EP suggested taking 150 mg so as to cut the time it takes to stop an episode from 4 hrs to 2 hrs. "Lots of my patients do that!"

That's when I discovered that having too much Flec in me actually makes it much, much worse. I wound up in a strong, 6-hr episode. At that point, I didn't realize that it was actually the Flec making it worse, so took another 50. At hour 8 or 9 or so, I called the on-call EP, who told me I shouldn't be on Flec at all because of the toxicity and I should have another ablation ASAP or I wouldn't be able to work at all. He didn't get the memo about the importance of reassurance....

My heart finally settled after about 13 hrs.

I was then directed to take 50mg 2x daily. After 2 days, I had horrible hallucinations and felt like crap, so quit and went back to PIP.

I tried 25 mg 2x daily. Still felt awful and seemed to trigger an episode.

All of which led me to the conclusion, along with the other day's adventure, that if I'm NOT in AF and take Flec, it will very likely trigger AF. Seems like the little Flec elves have a job to do and if the heart isn't shaken up, they'll make sure that it is so they can get to work! 😂

My new cardio listened to me and didn't start with the nonsense of "this works for most of my patients, so do this..." She's fine with me continuing PIP to see how it goes because it's clear my body doesn't tolerate having too much Flec in it. It's all about finding the right balance.

I shared in a post several weeks ago about my discovery that taking Arnica 15 min after Flec does typically speed up the time to stop an episode. This recent episode was unusual.

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in reply to Hidden

I've been a big fan of arnica - particularly in connection with surgery or injury - but have not used it in recent years.

I've all but stopped using PiP flecainide as it doesn't seem to make much difference. Last time I took some I took 250mgs and it seemed to do nothing. I usually just let AF run as it settles eventually without intervention. I don't think this is the best, but it's what I've mostly been doing for the past couple of years. AF seems to last for longer lately but is not happening more often. I had 22 sessions in a year a while ago (2017 maybe) and have had 18 in the past 12 months.

When I took flecainide daily five years ago (before my second ablation) I was on 150mgs twice a day and my AF was much as it is now but would go more quickly. At the time I felt my life was totally ruled by my medication. I don't feel as oppressed now as I can eat whenever I want.

secondtry
secondtry
in reply to Hidden

Its all down to timing isn't it and of course the individual. I was definitely a PIP person but fortunately my cardio persuaded me to go onto daily before the AF was frequent enough to get a hold. It has stabilised me for 5 years now and allowed me to focus on lifestyle and reducing my anxiety level. I accept that if you get on PIP medication early enough you can have an equally good result & less worry about the consequences of taking too much Flecainide, hopefully that is where you are Rellim.

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in reply to secondtry

Thanks, secondtry. I appreciate your good intentions and desire to help.

One of the major lifestyle changes that AF has made clear to me over the years as a priority is speaking up for myself and saying no when necessary.

I've found that the challenge and the beauty of AF is the variety of ways it can manifest in people as well as the many ways it is treated - sometimes with success, sometimes not.

It's definitely pushed me to stop myself from what I used to do frequently in the past - tell people what to do, especially if I found something useful. I learned to temper my passion, to pull back and do my best to ask more than tell others what to do, as difficult as that can be. To focus on sharing from my own experience. I find that dealing with AF just heightens the need for this approach.

The major challenge I've faced in 2018 in dealing with AF with doctors has been developing the strength to either speak up to or move on from the dynamic in which the docs are basically telling me what my situation is based on their norms of how things affect most people rather than shifting focus to actually seeing who I am and listening in the first place.

For this reason, I feel the need to speak up about this type of thing. For others, it may not happen or may not be a big deal. For me, it's basically a muscle I need to strengthen in dealing with AF.

Thanks for your willingness to reach out and be helpful, secondtry. I appreciate it.

Hi there. So much to identify with in your post! If there's one thing you can count on with AF....it is pretty unpredictable. Flecainide worked as a PIP for me for a while. Then Ablation 1 & 2. Stopped Flec. Then feeling good, tried halving the daily Flec dose - oops AF every day. Back on 100 Flec twice a day. Now just having very short runs occasionally.

One piece of info from my cardio nurse might interest you. Maybe you already know. Apparently Flecainide can sometimes trigger Atrial Flutter which is why they like to prescribe Bisoprolol with it. Could perhaps relate to your hunch about "too much Flec in your system"??

Just a thought. Onward and upward😊

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in reply to Coco51

Thanks, Janet. My docs have never said much about A Flutter vs. AF and this has always been confusing to me. I will bring this up on Tuesday.

Hi Nella - my what a roller coaster ride you are on.

Certainly Flec is known to cause or worsen Arrythmias in some people - any drug or compound that has the capacity to help also has the capacity to cause harm and I suspect the reason you had a bad reaction to it was because you were flipping back into NSR anyway. As everyone reacts SO differently it is very hard for anyone to comment.

Be aware it can also cause nightmares - it is a ‘dirty’ drug ie it has affects which are not only helpful.

I used Flec as a PIP for several years very successfully and the only problem I had was when I took it after I had eaten and felt very ill for some hours. Otherwise I would normally try slow breathing, Vaso vagal movements and plain old rest with my feet up for an hour or two before taking Flec. However, as episodes became more and more frequent I did go onto daily doses 100mgs x 2 daily and that did stop AF episodes for about a year - then they broke through anyway.

Long term solutions to ease AF burden apart from taking drugs or ablation are definitely lifestyle - but I remember you as someone who is fit and active and socially engaged so my only suggestion would be to seriously look at nutrition and I speak from experience. I think identifying nutrient deficiencies and sorting out my gut biome by making very small and simple changes to diet have increased my energy & resilience.

The other thing that has helped me is Pacemaker - September I was having symptomatic episodes every other day - since October and PM implant I have had 2 known episodes which only lasted a few hours and which I was only aware of because I felt the familiar thumping but because my HR stayed pretty regular, I didn’t get the terrible exhaustion from it and could continue what I was doing, albeit a little less energetically.

Whether or not I go for the final AV node ablation remains in the balance for technical reasons.

AF is such a horrible condition when you have to continue working for financial reasons as I think we can expect a little too much of our bodies and the affect of AF on them. Certainly if you are able, look at your commitments and see if you can ease the burden so you are pacing yourself more and see if that helps.

Don’t underestimate the value of pure rest and recuperation, good nutrition, quality sleep and stress reduction. Your Doctor is obviously on board with Lifestyle Medicine so talk to her about how you might be an agent in your own healing.

Love CD x

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in reply to CDreamer

Thanks, CD. It's interesting what you say about taking Flec after eating. The experience the other day was the first time I took it at that time, around 7 pm. I think it was right before or after eating in the evening, so this was unusual.

In terms of work, what I'm seeing is that I do fine with my one-on-one lessons via video. I love them, actually. Being an introvert, though a gregarious one, this set up suits me quite well. It's energizing and much easier to keep things balanced, especially since I can be in the comfort of my own home.

A new student appeared last week as quite an interesting surprise - a Chinese doctor of Integrative Medicine. Trained, skilled, and practicing as a Western doc of internal medicine and an acupuncturist. It will be fun to get to know her.

I've enjoyed a long career teaching college level students and adults in group classes. I've always enjoyed the interactions and dynamic that unfolds in groups. With AF, though, I find that I enjoy it less these days. It becomes stressful to deal with so many people and become so tired as a result of teaching them. Of course, the semester is coming to an end anyway, which tends to be a bit more tiring, but I do think the time to move away from this dynamic is coming.

I've done lots of exploration on nutrition; since my new cardiologist actually mentioned nutrition (imagine that!), I will ask her what specifically she recommends to support AF. I learned a lot about nutrition from the Chinese medicine perspective, too, which is really quite different from Western approaches, and has been helpful.

Perhaps we can message about details of your nutritional explorations.

Thanks for your help, CD.

secondtry
secondtry
in reply to Hidden

I noted both you and CDreamer refer to taking food and Flecainide. I religiously wait until my stomach is empty (4hrs after a full meal, 2+hrs after a snack) before I take Flecainide and then always 1 hour afterwards before I can eat again. On the very rare occasion I have taken Flec too early (i.e. with food still digesting) I have felt very nauseous. I haven't checked but I think it refers to this in the notes with the particular brand 'Actives' I am given.

I'm in the US. I've been taking Flecanaide 100 mg twice per day since April. It stopped my afib from the first pill. I'm just beginning to experience weird dreams in this past month. I will put up with the nuisance side effects since this is the longest time I've been in NSR since this all began in 2010 and I've had 3 ablations. I feel very well, except for my arthritic knees but that's for another forum! I also take a slew of other drugs for AF and high blood pressure and low potassium. Hope you get it worked out!

I've been on Flecainide for 6 months. I see Dr. Natale on the 18th of this month. I plan to ask a lot about Flec - I know they like to wean you off it, but I really do wonder if the heart in any way can get addicted to the drug and need it to function?

I understand from your post that you are using Flec as a PIP?

Happy for you that you don't have to worry about jury duty in the future!

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in reply to AnneWorner

Thanks, Anne. I'm seeing a new acupuncturist and so far it's helping me feel more relaxed, which, of course, helps overall.

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