How long have you been out of AF?

Hi,

I was diagnosed with AF November last year. I have been on Amiodarone since and other than two relapses at the beginning I have been AF free for 5 weeks. I'm currently cutting down my meds and take 100MG every other day. I'm looking to stop taking this (As per the docs advice) in the next couple of weeks. I'm aware that Amiodarone stays in your system for quite a while, so I guess it will still be contributing to controlling my heart rate. I've pretty much gone back to leading my life as I did prior to finding out I had AF. I exercise just as much (This is how I found out I was in AF, as I suffered dizzy spells), I have always eaten healthy, but I did like the odd Chinese meal so now tend to stay away from MSG. I have stopped drinking coffee and have the odd cup of tea and I still manage a few beers now and again.

My worry is I suspect I will go back into AF at some point. Amiodarone controls my heart rate and whatever it is controlling will no doubt go back into its defective state once my body is rid of the drugs. I am pretty much asymptomatic when in AF other than a fast and irregular heart rate. I now wear a heart monitor when I train, so will be aware when I go back in.

I haven't had an ablation, which as far as I understand can (In some circumstances) cure people of AF, but has anybody been AF free for a period of time after stopping medication? I'm 41 years old and have always been very active. I guess over the years I have lived life to the full, so that maybe a contributory factor to my current condition, but other than that I have never been ill.

Jason

6 Replies

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  • Jason1971,

    Are you seeing a Cardiologist or an EP?

    Did they discuss the meds that you are taking? Amiodarone is normally the LAST drug that they will give because of the really bad side effects. There are many rhythm control drugs out there that they could have tried first. Amiodarone is one of the strongest meds for AF but the side effects are far worse than the AF.

    You are correct in your worries. The drug does not cure AF it just holds it off while you are on it. The bad part of AF is that the more it happens, The more i will happen. There are no drugs that will cure AF. As far as being healthy, I know many with AF from 18 to 80 years old, from baskeball players to those who only get off the couch to go to the bathroom. AF shows n respect to your lifestyle. Some of those factors may affect how often and or trigger attacks but as a whole AF happens to anyone and for no real known reason.

    The only per say Cures for AF are the Ablation and/or Mini Maze procedure. And even those are not for sure. I just had an Ablation 2 days ago and am praying that it does stop my AF from happening again. I wish I would have had it done years ago. They say the longer you go, just living with AF, the less chance you have of curing it. Many EPs now are doing an Ablation in the beginning to try and solve it before it becomes chronic.

    Tim

  • Thanks for your response Tim. I was seeing a Consultant Cardiologist at the Spire Hospital in Leeds. I was getting conflicting information from my GP practice, so decided to make use of my Medical Insurance through work and go private. Cardio Version was discussed first as I had been in AF for several weeks. I was placed on warfarin and Amiodarone and waited a week to go for a heart scan. I had the scan and there was no damage to my heart. I was also informed at that point I was in NSR.

    My DR cancelled my Cardio Version and seemed pretty happy to let me wean off the drugs (Stopped warfarin completely). Not long after I was back in AF and his suggestion was to increase the meds for 3 days, then return to the normal dosage. This worked and I have been AF free since. When I did return there was suggestion of another drug (No name given), but as Amiodarone was working he suggested we stick with what we know. Ablation was mentioned ever so briefly, but as I was back in NSR days after there was no further mention.

    I have been advised to go for a Thyroid test in 4 months to check there are no side effects from the meds, but I feel I have gone as far as I can with this route. I have suffered no side effects whilst on Amiodarone, but I understand the long term effects are what I need to be aware of. I’m fortunate that I’m pretty much asymptomatic when in AF, If I wasn’t so active I wouldn’t have discovered it in the first place.

    I’ve learnt so much through forums such as this and feel so sorry for people who whilst in AF are not as fortunate as me. However, I believe this may be me in years to come.

    If I’m honest before reading more into AF and reading these forums I got the impression from the Doctor, that I was cured. I’m awaiting my next episode and will try my luck with my GP to see if I can be referred to an EP.

    Thanks again Tim,

    Jason

  • Good, That is the right plan to see an EP with another attack. When I first saw my EP we went over all of the meds and the possible side effects and from the very start I was told that Amiodarone was the "when nothing else works drug". There are way to many dangerous long term side effects. The idea from a Dr that because you took the meds and are in NSR now, means you are cured is absurd. AF doesn't just go away. I started out having only 1 or 2 attacks a year and that increased to 1 or 2 a month, then 1 or 2 a week. AF does not go away, it get worse over time.

    Again... An EP is the way to go. They specialize in the electrical function of the heart and have a much better understanding of AF and treatments. An EP would not ve treated you with a drug intended for a short term fix because AF is not a short term problem.

    Good luck in getting a proper diagnosis and treatment. Continue in what you are doing... Keep reading and learning about this beast (AF). While waiting for my Ablation to start on Monday, Talking to my Drs they asked me how I had learned so much about AFib and it's treatment. They were actually quite impressed. The information you need is out there, you just have to look for it. Too many have made the mistake of just thinking the Dr knows what he is doing.

  • I absolutely agree with your last para. I had so much conflicting information/advice from medics when I first started my AF journey some 20 + years ago that I swallowed up as much info as i possibly could so that i could conduct a fairly lucid conversation with the docs. I have been asked on more than one occasion by medics if I was a doc!

  • I have been out of A-Fib now since last July.

  • Well my run came to an end last Friday, but it was probably me to blame. I've just returned from a Holiday in Spain and didn't eat anywhere near as healthy as I have been over the past 10 weeks and drank too much beer and Coffee. Why? I have no idea, I thought I was invincible (That'll teach me). I'd stopped taking Amiodarone a couple of weeks before, so whether it was a combination of bad habits and no medication I don't know. I don't show symptoms other than a racing pulse which causes me slight dizziness when exercising. Unfortunately for me that is quite a lot as my job dictates it. I have an appointment with my consultant tomorrow and will discuss alternative medication. My quandary is I show no side effects on Amiodarone and if my thyroid test proves healthy why shouldn't I carry on with them? Or is 4 months too early for side effects to show? I now know caffeine is a massive NO and alcohol in moderation is fine. If I can return to NSR with the aid of Amiodarone, then I hoping my previous healthy lifestyle will keep me AF free.

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