Coping with AF

Hi I am new to the site, I found it when researching for support groups on how to cope with AF. I was diagnosed with PAF in April 2016 after several ECG's, holter monitor and echo cardiogram. Initially I was prescribed Bisoprolol (2.5mg once a day) but did experience breakthrough episodes and was then prescribed Flecainide (50mg twice a day) as well. After about 3-4 months, I started to experience breakthrough episodes again, they didn't last very long between 30 mins - 1 hour but on average at least once a week. After seeing a consultant again in the October, the Bisoprolol was changed to Diltiazem (60mg) and the Flecainide increased to 100mg twice a day. In November, I was taken to A&E when my heart rate had been high and irregular for over 5 hours and was making me light headed and breathless (even though I had been taking my medication), whilst there it was decided that I had to have a cardioversion, this did bring me back into NSR. My dose of Diltiazem was then increased to 120mg twice a day. Again I did experience small breakthrough episodes but they didn't last very long. In January 2017, I was again taken to A&E after suffering with fast and irregular heart rate for a period of time, light headed and breathless and was cardioverted again and my dose of Flecainide was increased to 150mg twice a day. I continue to suffer and have been cardioverted a further 2 times since January. I have now been put on the waiting list for a CTI ablation but may have to wait for 6 months for an appointment. Recently i have become quite anxious about the whole thing and felt quite alone, my family have tried to be supportive but don't fully understand it. They question why it started, could I have prevented it from happening, what should I do to stop it happening, why can't I stop it happening etc. Sorry it is such a long post.

20 Replies

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  • Hi Shelly and welcome to our forum. First let me say you are not alone as you will now have a group of friends on this site and we understand totally what you're experiencing with your AF.

    Yes, family tend to make sympathetic noises at first but they have no idea at all of the condition and if the truth be told, after a while really don't want to hear too much about it either. I've had AF now for about 12 years, have had numerous cardioversions and 3 ablations. My last ablation was last July, but you know when I speak to them my family never ask how I'm feeling. It's all very odd, the only thing I can think of is they may have seen me through lots of hospital admissions, but here I am still alive and getting on with life.

    AF is an abnormality of the heart, which can run in families it certainly does in mine. It has not been caused by anything you have or have not done. However, anxiety will make the condition worse so be aware of that and accept what you have with the knowledge it is most unlikely to kill you. Are you taking anticoagulants (sometimes called blood thinners, though they don't thin the blood)?

    Your AF story is a very typical one I'm afraid. One member on here has had at least 18 cardioversions, Have you seen an electrophysiologist (specialist on the electrics of the heart) yet or just an ordinary cardiologist?

    I would urge you to look at the AF Association - Patient information site listed in the Pinned Posts on the right of this page.

    I don't know where all the other forum members are today, guess out enjoying the sun, but I'm sure you will have a lot more supportive responses later.

    Jean

  • Hi Jean

    The Dr I have seen is a consultant cardiologist and cardiac electro physiologist.

    I have not been put on blood thinners yet, they didn't want to put me on them yet due to my age (43). However, I will be put on them 4-6 weeks before my ablation.

    I know my anxiety is not helping and I am trying to find ways of combating this.

    Thank you for your reply and I will have a look at the site you have suggested.

    Shelly

  • When I was first diagnosed with PAF, all I needed to take was a little baby aspirin (80 mg). After my ablation started on Eliquis (blood thinner). I am 57. Good luck with your ablation!

  • Welcome to the forum Shelly. People who don't have AF struggle to understand how dreadful the symptoms are, especially with PAF when we go from extreme normality to varying degrees of collapse. So, we MUST have done something to make it start - grrr. Except for my husband and closest friends, I now don't bother too much with enquiries from people about my health, except to say that I'm getting younger.

    As Jean has advised, read all you can and remember that not every aspect of symptoms and treatment applies to everyone. Knowledge about the condition and its treatments helps us to cope with natural worries and put things into some sort of perspective.

    It's great that you are seeing an EP (electrophysiologist) and are moving towards ablation. Everyone on this forum is helpful and someone will have the answer to any questions which you may have.

  • Hi Shelly and welcome - my story very much resembles Jean's - had AF for about 10 years, had 1 PVI ablations which cleared the AF for about 30 months but is now back but not as symptomatic as it used to be.

    Firstly - if you don't smoke, am not a binge drinker nor obese - it is nothing you did or didn't do. Stop trying to find those sorts of answers - that way lies madness. If you do smoke or binge drink - stopping may help as may losing weight - but that's easier said than done.

    Anxiety will certainly not help and there is plenty you can do about that

    Learn to switch off - Mindfulness daily practice will help. Start wth breathing exercises - focus entirely on you breath - keep your awareness there - breath in slowly for count of 7, hold for 1 second, gently and slowly exhale for count of 11 hold for 1 sec and then repeat. Continue for at least 5 mins. Reducing breaths in to 6per minute or less will reduce the physical sensations of anxiety.

    Look at CBT exercises for worry thoughts which will certainly exacerbate the anxiety.

    Distraction works - do anything you enjoy - the endorphin effect works wonders!

    Gentle exercise, good hydration and plenty of rest.

    Check that you have good sleep patterns - sleep apnea is known to be a cause.

    Go to the AFA web-site and learn all you can and prepare a list of questions before your consultation.

    Ask any questions here - such a supportive and knowledgeable - you have indeed found friends here.

    Best wishes CD

  • Are you anywhere near Surrey? We have a good support group in Epsom. Sorry you re suffering

  • Hi Rosy, I live in Birmingham.

  • Hi Shelly, sorry to be late joining in but I've been on the M5 car park all day going from Devon to Castle Combe and back. Others have said most but I can not emphasise too strongly the AF Association website where you will find so much useful information. Of course at your age you should not need anticoagulation other than for the period of ablation/recovery, Your drug regime seems pretty normal. It is a very difficult journey as AF is such a mongrel condition and no two people experience it the same although all have a common thread.

    Ask any question and we will try to help and please try not to worry. AF and anxiety are common bedfellows I know but all I can quote is what my EP told me years ago . Three things to remember about AF 1) it won't kill you 2) it won't kill you and 3) It won't kill you. Might feel like it sometimes though!

    Bob

  • Are you overweight? I lost 50lbs, and my PAF is very seldom and mild. Losing excess wieight can decrease AF episodes by 65%

  • Hi Shelly and welcome. This forum is truly a saviour for us and so supportive. I understand how you feel and how anxious this makes you. I have had AF for around 6 years and had a cryo ablation 2.5 years ago which really helped although not been totally AF free. You are not alone and feel free to ask as many questions as you need. Where are you? Happy Sunday :)

  • Hi Shelly Thank you for this post. Having incurred symptoms for 2 years that were coinciding with Hiatus Hernia problems I was finally diagnosed 8 weeks ago. It has been the longest and most lonely weeks of my life as people can't understand why an energetic vital person is reduced to large periods of time sitting down feeling totally exhausted. My symptoms are no where as serious as many on this site but I am fighting to achieve some version of normality or identify what is normal now As a carer for other ill adults It has been very upsetting to throw them to the Wolves because there was no one else to help out.Comments re anxiety have been noted as well as comments regarding sleep apnea. This site has provided lots of information and support and I am very grateful to yours and others comments

  • Hi Shelley. I totally "get"the anxiety issues. I had increasing numbers of panic attacks and anxiety prior to having my first episode of AD. It was a relief to get a diagnosis of something if I'm honest. The panics weren't AF but felt worse oddly. I have found "headspace" an app for daily mindfulness meditation a great help. There is a free taster so you can judge if it's for you. Also youtube videos and fb page. Lots of help and support here. Xx

  • Thanks, I have downloaded the headspace app.

  • Hi Shelly. As others have said, lots of good people and advice on here. Anxiety was my first problem after my attack of AF was over. My solution was to read and learn lots about it. Dr. Gupta at Yorkcardiology is very informative. Do what works for you - whether research, mindfulness or whatever. My best distraction is to go and sharpen my woodworking tools! As Bob said, this will not kill you (unless your 'thing' is mountaineering!).

  • Hi Shelly,

    Lots of good comments and thoughts already expressed. It took me a long time to accept that I was not causing my AF and, that, apart from trying to eat well, get moderate exercise, and practice mindfulness, there was nothing more I could do to "stop it" from happening. I spent way too much time charting what I was doing, thinking, eating, etc., before each episode and just when I thought I had found "the trigger", there was some other 'factor' that seemed to be the culprit. I wasted over 7 years of my life playing this game and the only thing that has stopped my AF was a PVI last August. After a rough 2-3 months after the ablation, I have been in NSR for almost 8 months. The AF may come back at some point or it may not but I refuse to waste any more of my life worrying about it. I will have a second ablation, if necessary, but I no longer want to live with AF in my head. Things will get better. Take care.

    Steven

  • Hi Steven, I have been doing the same thing trying to find triggers but not actually getting anywhere. This in itself has made me quite anxious.

    Following the advise in the replies, I will stop doing that now and focus on reducing my anxiety through mindfulness and reading up on the recommended sites.

    Thanks Shelly

  • Hi Shelly,

    I practiced Yoga and mindfulness meditation which I found helpful, now I mainly practice Qi Gong. The one thing I had to keep in my thoughts was that AF likely wasn't going to kill me and it will pass. The time between episodes got more frequent and sometimes more difficult. So, for me, I needed an option and hope which the ablation gave me. I wish I had decided on the ablation from day one because it robbed me of over 7 years of quality living, always worrying when the next one would hit. I had no control over the AF no matter what I did, but, I could try to roll with it mentally. I try not to give AF any more time in my thoughts - I try to dismiss even thinking about it, to banish it from my mind so I can redefine myself as someone without AF. I hope my ablation keeps me in NSR for the rest of my life but if not I'll have a second ablation. The point is that there is the ablation option and in a few years the procedures and options available will be better. We only ever have the moment we live in, l so right now I'm in a NSR moment. The fear about AF, like so many other diseases, is that it may kill us, but reality is that we have a better chance of winning the lottery than dying from AF. This thought is what got me through the bad moments. Things will get better, believe it.

    Steven

  • Hi Shelly, I know exactly what you mean. I went for years thinking I had severe anxiety only to be told I had AF The problem I have now with family and friends is that I think they think I am being lazy when I have to sit down due to breathlessness. Because it's an invisible condition people are not aware of the pain and anxiety you are going through. Try to accept your condition and look out for No 1, it will improve.

  • Thank you for all your replies, I don't feel quite so alone anymore 😊. Your suggestions and advice is greatly appreciated and I am happy to know that I have somewhere to come if I have any questions now.

    Many thanks

    Shelly

  • Please see the information about reversing AF naturally: drjohnday.com/get-rid-atria... -- didn't think an online doctor was really going to help but emailed him anyway... and he replied within 24 hours!! and has done so every time since. the man saved my life. all those meds... could be too much toxicity. see the website.

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