Options?

Hi, I've just started on this forum and finding it really useful and very supportive. I will briefly summarise my history then have a question to ask.

I'm 40 years old reasonably healthy with an active lifestyle with young children - both at home and at work as a teacher. I was diagnosed with Persistent AF in February 2013. I've had three versions and two ablations. I really thought I had come to the end of my AF journey. After my last ablation in September 14 I had a one off episode in February 15 and then nothing until two weeks ago. In this time I was drug free too. I have now had two episodes in the last few weeks (both I think triggered by stress) and am back on the drugs: Xarelto 20mg daily Flecainide 50mg twice a day Bisoprolol 2.5 mg daily.

I hate the drugs especially the Flecainide which makes me nauseous, dizzy and very tired. I have an appointment with my consultant in April and want to be prepared with the facts. I guess I have three options:

1. Stay on the drugs (not an option for me)

2. A pill in the pocket (better but not solving the problem).

3. A 3rd ablation.

My question (thanks for sticking with me!) is whether there is another option I am missing and how many people here have had three ablations and whether this was the one that worked. Have people had more than 3.

I really appreciate your time and help.

Richard

11 Replies

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  • A 4th option might be to change drugs. There are many and only a few work on me. My EP put me through a series of changes, 4 in all, to get the one for me on the last occasion, which is working and without any side-effects I can detect. What they are doesn't matter because we get different results.

    I still hate taking drugs though, but not much choice I'm afraid.

    Koll

  • Thanks for the advice will look into the different drugs.

  • I have had 3 ablations, third was18 months ago and so far so good.

    Kohl is right there. The meds were awful for me, trial and error. Some good, some had to be changed. was never without side effects though. Different for everybody.

    4th ablations and so on can be done.

    Phil

  • Thanks my 2nd has lasted me for a while so hopefully another will be the final one.

  • See the AFA publications because I think that one of the booklets / articles that were there did cover this (I say were because I saw it 15 to 18 months ago and as I was / am in Persistent AF it was of particular interest. There are statistics there that quote success rates in persistent AF with 3 attempts. In my case EP said it would more than likely take 3 attempts. There are quite a few people who had 3 ablations (BobD, Volunteer had 3 Ablations) and some people who have had 4 or more ablations on here.

  • Thanks I'll try to find it!

  • I had three and all good. I know of people with four or more.

  • I have been on flecainide since October 2015. I started on 200mg/day and recently dropped down to 100mg/day. So I only have a little bit of experience.

    I have never had the side effects you discuss. I am 42. I exercise a lot. I have realised that eating healthily is key. I am not talking about being boring and anal about what you eat and don't eat. But be sensible: reduce (not necessarily cut out) the carbs, lots of fruit and veg and salads, as little sugar as possible, as little of the 'bad' fats as possible AND LOTS of water.

    My experience is that if i don't maintain a healthy lifestyle (which I enjoy doing) then all sorts of weird stuff starts happening in my head and chest that didn't happen before.

    My question is - if you are eating healthily, are you sure its the flecainide that's giving you the side effects?

  • Thanks Jonathan. I try to eat healthy (could probably improve a little) and I have water next to me from dawn till dusk. I agree about the water I can feel the difference when I haven't had enough.

    I think it is the flec because over the three years I've had time in it and time without and I always feel better without it.

    I spoke to the AF nurses at the LGI yesterday and they said I could change my drugs but as I want to be off them I might as well stick with it until consultation appointment and proable 3rd ablation. I could get side effects with other ones.

    Thanks for your advice it is appreciated.

  • Tony Blair had 3_ablations and it seems to have worked for him.

  • How do you know that?

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