I've had AF for over 25 years, I'm just over 50 now and I was a rare thing when I was first diagnosed, there weren't many people my age with it and I was always seen by the 'main man' at the hospital at appointment time. Mind you, I didn't rate him that highly. So, 25 + years on, a few ups and downs and changes to medication and I've been steady on Flecainide now for at least 20 years. 200mg/d. I got on with life and mostly coped, gave into the fatigue when it occurred (although when I mentioned this to the consultant was told this wasn't a recognised symptom of AF) and when it passed got going again. Had 3 children and a husband who worked away, so you just get on. I know that others of you have mentioned it and it was a great relief to find this forum and read that you did, I knew it wasn't it my head!! I have also learned that a lot of things have changed in the treatment of AF, And that it can be treated with ablation. The only trouble is because I am steady on the Flecainide, I haven't seen a cardiologist now for about 10 years. I went to my GP to ask for a review of my treatment and to be seen and talk about if I was suitable for ablation. He said he would refer me to Cardio at the local hospital. Letter came back...er no! As she is stable, no need!! I tried to fight my corner and said but there may a more up to date treatment, my GP wrote again and was once again refused. Apparently being seen is based on need not want!
Having read some of the things written on this forum about Flecainide, I wondered if I could manage without it at all, and take it as a bolus when an episode occurs, especially after some people mentioned the time between episodes seemed to get less and less and that they seems to need more Flecainide. So the long and the short of it is, I decided to try cutting back to see what would happen, for a few days on only 100mg I was fine, the next week, ignored the oncoming fatigue as I had a busy schedule, third week, flibberty gibbert heart so back to full strength. Back to normal in 2 days. Basically my ticker cannot manage without the 200mg of Flecainde a day, I am stuck, nobody will see me, I don't even know what an EP is?! I had this most of my life and would love to not have it, I carry extra weight that I struggle to get rid of and just feel that I should not be putting this chemical in my body for the next 20/30 years!!
So after all this long diatribe (and thanks for sticking with me this far!), has anybody got any ideas what I could do or suggest a game plan for moving forward?
Thanks in advance for any advice you may be able to give,