Back in AFIB after 2 years free - Atrial Fibrillati...

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Back in AFIB after 2 years free

Lien-Ju profile image
42 Replies

Hello there! It’s been 1 hour since the bell rang! I’m back in AFIB after a little bit 2 years free.

To be honest I was pretty sure this day will come but I was hoping he comes later. I turn 25 2 months ago and was almost forgetting what AFIB means?

For now I am at home, I try to be as calm as possible. I took 1 xarelto and 1 amiodarone. I was wondering if I needed to take 1 flecainide or do I just need to wait?

Thank you for your help guys.

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Lien-Ju profile image
Lien-Ju
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42 Replies
Singwell profile image
Singwell

Sorry to hear that AF called again! What advice do you have from your cardiologist for taking the Flecainide? It is best to follow that. Are you in a country where you can telephone your doctor for advice?

Lien-Ju profile image
Lien-Ju in reply toSingwell

Hello there! I had my doctor at phone and he told me to go to the hospital to have an EKG. Still in AFIB unfortunately :(

BobD profile image
BobDVolunteer

Better the flecainide that the amiodarone I would say but best contact your EP fro advice.

Lien-Ju profile image
Lien-Ju in reply toBobD

Hello BobD thank you for your advice, I called my doctor and the only thing he said was « Oh you took Amiodarone and Xarelto? Good, go to the hospital they will make an EKG » didn’t have any other information. I am at hospital but they don’t know what to do. I try to stay positive.

Safc1983 profile image
Safc1983 in reply toBobD

Why is that Bob? I’ve just recently been put on amiodarone

BobD profile image
BobDVolunteer in reply toSafc1983

Amiodarone should be the drug of last resort due to its toxicity under European Society of Cardiology Protocols.

Safc1983 profile image
Safc1983 in reply toBobD

Oh right! I’d best get on the phone to them about that. Thank you Bob

BobD profile image
BobDVolunteer in reply toSafc1983

Depends why. Short term use prior to cardioversion (maybe three months) is often used but not a good idea to be on it long term.

Safc1983 profile image
Safc1983 in reply toBobD

(Hopefully) short term awaiting ablation

Ducky2003 profile image
Ducky2003 in reply toSafc1983

I was on Amiodarone for 3 years as it was the only thing that kept me in NSR after cardioversion. I'm back on it again, following a gap as AF has reared its head again. My ablation is due early next year. Just make sure they monitor you whilst you are taking it, LFT etc.

Safc1983 profile image
Safc1983 in reply toDucky2003

What is LFT?

Ducky2003 profile image
Ducky2003 in reply toSafc1983

Liver Function Test.😊

Safc1983 profile image
Safc1983 in reply toDucky2003

Oh right! Thank you.

cindyrella profile image
cindyrella in reply toBobD

That is exactly what my cardiologist said. Amiodarone is toxic.

Ducky2003 profile image
Ducky2003 in reply tocindyrella

It's not ideal but the only thing controlling my AF currently. I'm extremely symptomatic without it.

Paulbounce profile image
Paulbounce

Sounds a similar situation to mine Lien - I'll be coming up to the two year mark soon. I've had 2 episodes so far and was told to take an extra flec when afib kicked in. As a PIP it worked wonders. My understanding is that it soon be taken within 20 minutes of afib starting to work best.

However as you have taken other med's already I don't know how the mix would work. Personally (assuming you have been told to take flec as a PIP) I would want to take it sooner rather than later. As above, try and contact your medic asap and check. If he / she says yes then you are good to go. Hopefully it will work it's magic and you'll be back in sinus.

Just one last thing - check the dose you should take too. This seems to vary from person to person ie 100mg followed by a further 100mg an hour later if not back in sinus (max 300mg in 24 hours).

Good luck.

Paul

Lien-Ju profile image
Lien-Ju in reply toPaulbounce

Hello Paul thank you very much for your answer, next time (I guess there will be a next time) I’ll try flecainide instead of amiodarone. Unfortunately I’m still in AFIB 11h later (I still hope for magic), can I ask you how long last your episodes?

Paulbounce profile image
Paulbounce in reply toLien-Ju

Hi Lien.

I know the minute afib kicks in now - I didn't used to but my body is now used to sinus and the second it starts I'm aware if it.

For me I carry a flec in my back pocket and take it there and then - maybe an hour or so later it works. However that's on an empty stomach. I find though my HR is always much higher at rest for a few days after afib.

Stay positive and expect these things to happen from time to time - it will for most of us.

I hope to read an update from you soon saying things are back normal. Fingers crossed for you 👍

Paul

Finvola profile image
Finvola

I'm sorry to read that Lien-Ju - such a disappointment. I don't think you should take Flecainide and Amiodarone together. Please contact your doctor for advice. Try to concentrate on something enjoyable to lift your mind - hope NSR returns quickly.

Lien-Ju profile image
Lien-Ju in reply toFinvola

Hello Finvola, thank you for your answer. I didn’t take flecainide (I was too afraid) for now I’m waiting to get back in sinus rythm. I think about Christmas day :)

jeanjeannie50 profile image
jeanjeannie50

Lien-Ju

Sorry to hear that you are back in AF.

Like Finvola, I don't think you should be taking Flecainide and Amiodarone together either, as both are strong drugs. Please seek medical advice.

Jean

Lien-Ju profile image
Lien-Ju in reply tojeanjeannie50

Hello JeanJeannie! For now I’m still waiting et the hospital (still in AFIB). They seems to be a little lost at the hospital, so I am hahaI just try to stay positive but I’m only 25 and this is beginning of my life, hard to live with the fear that AFIB could come and goes away at any time.

jeanjeannie50 profile image
jeanjeannie50 in reply toLien-Ju

I agree with you AF is a horrible condition! Fortunately now I'm in constant AF my life is so much better, no nasty big attacks!

What happened at the hospital?

Jean

Lien-Ju profile image
Lien-Ju in reply tojeanjeannie50

I'm glad you feel better, being in constant AF avoid you to wait the next episode, more peaceful in some way.

Well, nothing great happened at the hospital, the cardiology stage was full and all the cardiologist were busy so they gave me a beta blocker and let me out few hours later (still in AFIB).

This morning I decided to take flecanide (150mg) and 1 hour later I was back in sinus rythm. Maybe the next episode will be in few months or years, maybe next week. I'll call my cardiologist to have more explanation. Thank you very much Jean for your support you are really kind :)

Singwell profile image
Singwell in reply toLien-Ju

Hey, I'm so pleased you are back in sinus rhythm. I'm a lot older than you but understand completely the feeling of uncertainty you experience in 'waiting' for the next episode. It's something we all have to learn to live with and very tough when you're so young. Do you have lone AFib? Meaning no other conditions such as hypertension or other arhythmia? Perhaps noticing what was going on in your life just before this and the first episode might be helpful? Perhaps some stress, exertion or a digestive trigger made your heart go into overdrive?

Andyt36 profile image
Andyt36

Hope you are doing well let us know how you go......

BRHow profile image
BRHow

You stated that you know immediately when you are in AF. Are you saying that you went 2 years without ever having any issues and then just one day BAM? Did you do anything out of the ordinary? Caffeine? blow? alcohol? That seems like a long time to be totally fine and then AF.

KMRobbo profile image
KMRobbo in reply toBRHow

I went 55 years and 2 months and went BAM straight into AFIB!😀

Paulbounce profile image
Paulbounce in reply toBRHow

Hello BR.

I think that question is to me rather than Lien ?

It happened twice since my CV. As soon as it l kicked in I felt my heart pounding like mad and confirmed it with an ECG on my tablet. Both times were when I was traveling abroad and had little sleep (trigger for me). I remember the last time it was a 'silly hour' flight and I got to the hotel maybe around 3am and was at awake at 5. That same day it started but flec soon saw it off. My HR always stays higher at rest for a few days after though which puts you on edge.

Paul

Lien-Ju profile image
Lien-Ju in reply toBRHow

Hello there BR. Exactly 2 years AFIB free and then I woke up yesterday at 6:00 AM and was in AFIB. Today I took 150mg of flecanide and was back in sinus rythm, this condition drives me crazy.

Singwell profile image
Singwell in reply toBRHow

I know right away - same as Paul. You get to know the signs. Tell tale fluttering sensation and slightly spaced feeling. Mostly for me it's a sense of 'something is wrong'. The heart has its own neural network that sends messages to the brain so I'm guessing it's something to do with that.

Jfbould1 profile image
Jfbould1

Sorry to hear. From my recent experience, flec acts somewhat quickly, as a PIP, whereas amiodarone must be “loaded” into your system by taking multiple doses over a few days or more. Since you’ve already taken it, I’m in agreement that you should follow medical advice, as sparse as it seems. Might need to push a little harder to more thoughtful advice.

Lien-Ju profile image
Lien-Ju in reply toJfbould1

I guess you are right, this morning I was still in AFIB and I took 150mg of flec and was back in sinus rythm 1 hour after.

Jfbould1 profile image
Jfbould1 in reply toLien-Ju

Great! Happy to hear that.

Sally_Scott profile image
Sally_Scott

Hi Lien sorry to hear that. We must be linked as I’ve been Afib free for 18 months after a successful TOE Cardioversion and mine started on Sunday whilst shopping with my daughter. Heart rate soared 😩. I took 2 flec but to be honest it didn’t do anything. For me personally I wouldn’t touch Amiodarone ever.

I was taken by ambulance yesterday morning (day after attack). I am on digoxin now and heart rate down to bearable. Unfortunately for me I’m a permanent Afib so now it’s a waiting game till I can have another TOE cardioversion.

So are you in permanent Afib? What is your next step? Good luck

Lien-Ju profile image
Lien-Ju in reply toSally_Scott

Hello Sally! Wow I’m so sorry for you, I almost forgot what was AFIB to be honest, until yesterday... I had 2 episodes 2 years ago, and self converted 4 days after my AFIB attacks. I hope it will work the next few days. I tried flecainide 150mg this morning. We will se what happen, what is a permanent AFIB? Does it mean that you can’t be converted by meds?

Lien-Ju profile image
Lien-Ju

UPDATE: AFIB is gone (for now) this morning I woke up at 10 AM and was still in AFIB, I decided to take 150mg of Flecanide and 1h later AFIB was gone. This afternoon I'll call my cardiologist to know what I can do after this episode: ablation, meds? What is the best option.

I really want to thank you all guys, I am 25 and I know my life is different from other people who can fully enjoy they life without beign afraid of being in AFIB, yesterday was a nightmare and today I'll rest to enjoy the next few days. Thank you for your support, I'm glad having found this community I don't feel lonely here.

I'll make another update when I'll be sure about my decision, I hope it could help other people.

Finvola profile image
Finvola in reply toLien-Ju

Good news Lien-Ju - enjoy NSR and best wishes with your cardiologist.

Lien-Ju profile image
Lien-Ju in reply toFinvola

Thank you very much Finvola, I hope you are doing great, thank you again for your support :-)

Singwell profile image
Singwell in reply toLien-Ju

Do you know about the case of Dr Rupy who does the Drs Kitchen Podcast? He was in his 20s when he develop AF. He got rid of it by lifestyle and dietary changes, which is why he now works part time for the NHS and the rest of the time working to inform the public about health and wellness. His story is worth reading about. He tells it in his first book and also talks about it in his early podcasts. You might find this helpful and it will give you hope. Don't give up!

Peony4575 profile image
Peony4575 in reply toSingwell

I listened to his podcasts thanks it was interesting

cuore profile image
cuore

I find it strange that you have both Amiodarone and Flecainide to take as a PIP. You are prescribed either one or the other, not both at the same time.

Amiodarone and Flecinide are both anti-arrhythmic drugs. (in the same class), so they are contraindicated to take together. From drugs.com:

drugs.com/drug-interactions....

The specific passage to consider:

"Using amiodarone together with flecainide can increase the blood levels of flecainide. This may increase the risk of an irregular heart rhythm that may be serious and potentially life-threatening, although it is a relatively rare side effect. "

In my experience, I was going in and out of AF after my second ablation on Amiodarone. When I switched to Flecainide, I went into sinus and stayed there for five months. For my body, I concluded that it was keeping me in arrhythmia plus giving me uncomfortable side effects. I will never take it again. Because you did not convert taking Amiodarone, you may have a body similar to mine. Or, as Jfbould said there needs to be a loading period with Amiodarone. I had that loading period, bur Amiodarone kept me more in arrhythmia than in sinus.

Finally, I would make sure that you get proper medical advice both in terms of AF and the meds you are prescribed. Since you are only 25, request to see an electrophysiologist who can guide you for long term goals, otherwise you may end up fumbling about with many medics who do not know how to treat the condition and do more harm than good. For example, when first diagnosed, my GP prescribed metoprolol, a beta blocker, that ended up doing me harm.

Keep us informed. Again, you are so young, and many of us have had experiences you may still to go through.

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