Hi, I just wanted to return to the forum to share my story and let people know there is a light at the end of the AF tunnel. I was a regular contributor to the forum but needed to move away from it to help with my recovery. I am very grateful for the support and empathy that it gave me.
I was diagnosed with persistent AF in February 2013 after collapsing on a walk - a cause for it has never been found - I was fit and healthy although in a reasonably stressful and busy job. I was 37 at the time and my second child was due in March. It felt like my life was ripped away from me and I wouldn't get to see my children grow up. As my understanding of AF increased, I began to see that there were solutions out there and my positivity increased. I quickly cut out alcohol, caffeine, tried hard to exercise when I could and reduced stress where possible.
Through the wonderful care of Leeds General Infirmary, I had two cardio versions and three ablations. After my first ablation I had improved to paroxysmal AF. Although sometimes I felt it wasn't an improvement as it felt worse going in and out of AF rather than been in it all the time. Last July (2016), I was given a third ablation and I was told that they couldn't really find any new areas to burn so basically this was the best it would ever get. This was the lowest point I got to as I always hoped I could be AF free.
My symptoms were the usual of AF with tiredness and dizziness being the worse. These would occur regardless to whether I was in AF or not. Throughout the time, I had managed to keep working as a primary school teacher but after my third ablation I struggled more and ended up on long term sickness.
It was at this point where I began to realise that AF wasn't necessarily the direct cause of all the symptoms. Why did I get the symptoms when I wasn't in AF? My first question was the drugs and whether they were giving me side effects. I went back to see my cardiologist and asked to try some new drugs. I asked for a few suggestions so if they didn't work I wasn't waiting another 6 months to see him again and to try another. I am now on Nebivolol 1.25 mg. I also take Magnesium supplements and multi vitamins.
The change of drugs improved things but I still got symptoms even when not in AF. I began to realised that anxiety had become to be a real issue and that the symptoms were due sometimes to anxiety. I was avoiding leaving the house and was extremely anxious. When I did go out it would often lead to panic attacks which would often lead me to go into AF. It was very frustrating because I could see what was happening but could not control it.
It was very confusing as the symptoms of AF were the same as the panic attacks and of the drug side effects. I never knew which was which and I was in a viscous circle.
I began counselling and I am indebted to the help it gave me. It helped me see and understand the anxiety and helped me with strategies to control it - mindfulness and distraction techniques were especially useful. One problem was that I thought about AF every second that I was awake - checking my pulse, watching for symptoms and reading the forum - it had become a habit.
As I said at the start, there is light at the end of the tunnel. I have gone over 200 days without AF, I am back at work, I am enjoying life and doing things spontaneously without stopping and thinking AF. Will I ever be cured - probably not as it will always be lurking (although new techniques are coming about all the times). However, I have got my life back and feel like I have it under control. I don't know what solved the issues (it is probably a combination of them all -marginal gains) but I am going to keep doing them all:
Finding the right drug
No heavy eating
Keep control of the anxiety - don't let it take over my life
Talk to people about what is happening
Not constantly checking for symptoms
Drinking lots of water
I hope someone may find this useful who is only just starting on their AF journey and experiencing some of things that I did.
Take care and good luck