Light at the end of the AF tunnel - a success story

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

Magnesium supplements

No caffeine

No alcohol

No heavy eating

Exercise

Positivity

Mindfulness

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

Richard

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38 Replies

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  • What a wonderful, positive post Richard - thank you. It certainly would have helped me immensely at diagnosis.

    I hope you continue to live life to the full with your new lifestyle.

    Very best wishes.

  • I'm very glad to hear that your life has improved. I wish you continued good health.Thank you for sharing your experience; it is good to hear there is light at the end of the AF tunnel. Your post and others on this forum have given me the ammunition to challenge being fobbed off even though it is exhausting in itself.

  • Glad it helps. Good luck in your ventures. You are right to challenge.

  • Well done! You have proven you have to be your own advocate and go with your gut instincts. Too many doctors want to push meds and if they don't work they push even more. I'm not in favour of medication unless it is going to make me feel better, enable me to live a better life or cure my symptoms. If it just masks, and makes me feel worse(because of side effect) I'm not interested in taking it. I refused all meds except for the anticoagulant and after 10 weeks post 3rd Ablation I'm feeling great. All the best to you Richard and well done😄

  • I agree with you totally Clare about the medications just masking the symptoms and often making one feel worse. Three ablations down and now AFib free for the 10 weeks since the last operation.

    I too am pulling away from the forum in an effort to just forget about AFib and get on with life and stop stressing about it.

    But the forum was there when I needed it when in absolute panic about ectopics after the last procedure. So a big thank you to all those members who responded to my posts.

  • I cannot better Finvola's post. Very best wishes for your future good health.

  • Richard, thank you for taking the time and trouble to write such a great post. I'm sure that this will help many.

    Here's hoping that your new regime will keep you symptom free . ....lots of pointers for us all I think .

    Regards

    Sandra

  • Hi Richard

    Thanks for your positive post and sharing all the tips that you feel helped you deal with your AF. I'm sure everyone on the forum will gain inspiration and a desire to improve their condition through your suggestions.

    We need more posts like this.

    Jean

  • Hi Richard :-) it's good to hear things are going well for you.

  • Great positive post giving us all an insight of how to control this nasty AF

  • Such a common story Richard but not everybody manages to beat the fear. Well done for all your success and long may it continue.

  • Well done Richard.Something akin to my own journey with the exception of the ablations.I adopt all the tactics you mention at the end of your post and am largely af free and seem to be improving as time goes on....best wishes.

  • Exactly the same for me.

  • Thank you. Such wise advice - and inspirational as well.

  • Hi thanks for posting this I was diagnosed in April this year and have fallen into many of the pitfalls you describe. Always anxious and checking for symptoms frightened to go out or too far. The meds make me feel tired and exhausted for large periods of time. But your words offer advice and support and your remedies are along lines that I was beginning to realise and follow

  • What a great story. I think your shortlist of things to avoid and do is spot on.

    Thanks for letting us in on your experience and thoughts 🙂.

    Koll

  • Wonderful post thank you for sharing. So pleased you are back on track. Enjoy.

  • Thank you Richard made my day.

  • Wonderful news Richard75 ! Great to hear about how you've tackled it. I'd noticed you'd taken some time out so I'm glad to hear you were getting yourself on the right track. Long may it continue!!

  • Just wanted to say thank you for all the kind words on my post. If it has helped anyone I am delighted. This forum is often filled with the negative (not a criticism it is the nature of the forum people sharing their issues and seeking help and support). Maybe there could be a place where people can access the success stories. Good luck in your journey.

  • Nice to read such a positive post. Thank you

  • Well done you!!

    Onward and ulwards.

  • Great post Richard, very positive and how it should be. I knew right from the beginning that stress/anxiety was the main cause of my problems too and the point that I kept my emotions controlled and to myself didn't help either. When you are in a job with 140 staff under you then you have to show self control and leadership but inside was a different matter and racing around didn't help either, I thought that I had it all under control but my heart said different lol. Well done Richard and keep going forward and show the way, hopefully your post will help others too.

  • Thank you for your post Richard. It is always good to hear the positive and realistic approach to AF and your ideas certainly help. Good luck in the future. Anne

  • That is the most awesome thing I have read since joining this forum. I am at the start of my journey, also 37, and can already see so many of the points you raise happening to me. This may help me a great deal.

  • I really do hope it helps you. The biggest change for me was my mind. It is a very powerful thing - if I thought I would feel dizzy low and behold I felt dizzy. I used an excellent app called 'Headspace' for the mindfulness - it offers a trial. I also got the counselling on the NHS. Good luck!

  • Just added drinking lots of water to the list which I forgot!

  • Well done Richard.

    I'm sure your post will help many people.

  • Thankyou Richard, very encouraging. I have been af free for one year. And so thankful, but still have to fight anxiety, as you have said it can make things much harder. So I was reading the posts every day. But have found better for me to pull back and occasionally have a look. I have a Garman Vivasmart hr which I think does give me some security that it's ok, even when I have extra beats but not af

    Thankyou again

  • I am doing all this except drinking the water so thanks for giving me something else to try!

  • Thank you Richard for your post, it is really uplifting. My afib is not so severe as many others but the anxiety is still huge, 'what if....' is constantly on my mind and I find I back out of going places unless I can do a full risk management! I identify with much of what you say, overcoming the anxiety is key for me and getting some decent sleep! I will be keeping your post handy!! Best wishes!!

  • Richard that's a very good post. Thanks for taking the time to do it.

  • Many thanks for that Richard. I will certainly keep your list to hand. Everything you describe is what I am going through at the moment. Apologies to all for just lurking on this forum.

    Problem for me is only the doc has diagnosed AF and this after one ecg and two blood pressure tests. Currently on warfarin and biosoprol. Echo cardiogram due on 25th and not seeing a consultant until early December. Not sure if I have AF or it is something else or if there is an under lying disorder. Just got to wait I guess but for me it has wrecked the entire summer.

    Your post has helped greatly though and once I get some real medical opinion I will be back to share my experiences with all.

    I'm the meantime more positivity from today! :-)

  • Thanks Richard, I think your list at the end is so important, I follow all of that and have been AF free for 3+ years albeit on Flecainide as well; the latter stopped the AF but it was 'the list' that made me feel well and have a normal life.

  • Wow great post! I am going to print it and put it on my wall. I identify with so much that you write - the panic attacks, pulse checking, avoiding going out, struggles with medication, confusion about symptoms are all part of my story, and your remarks about persistent vs paroxysmal AF are my thoughts too. I find your steps towards gaining control very inspiring. This week I get my second ablation and my expectations are low, but I am going to try and follow your example. So thank you.

    Best wishes, Janet

  • Good luck with the ablation Janet. Lots of ablations are successful so keep positive!

  • Thanks very much. Yes I know at least 3 people who've had ablations and they don't have AF any more. Fingers crossed!

  • I have heart disease & have always had an irregular heart beat from a heart murmur I was born with. I've had 3 stents since 2009. 2 1/2 years ago AFib started, episode every few months. Early this year increased to about 1 episode per month. 3 months ago it increased to 1 every couple of weeks & then about 2 months ago started being every 8-10 days then about month later increased to 1 about every 5 days. About 2 months ago I was introduced to Hempworx CBD OIL & started taking it as it is good for cardiovascular system. Last week I realized I had not had an episode of AFib since 8/20!!!!!!! So I googled "can CBD OIL help AFib". Several articles popped up & I read them all & one said it could suppress arrhythmias!!! Another said it can help with anxiety & depression, which I had also been having!!!

    I am BEYOND EXCITED!!!!! It seems to be working for me!!!!! If interested, you can get info on the product which is used sublingually at

    ggj2.com. I welcome questions!

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