I need your help please.........

I am preparing a short talk on living with AF as a chronic condition and would very much value your input so if you can, please comment on the following question:-

What have you found to be the most helpful thing you do which helps you in living with AF as a chronic condition?

46 Replies

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  • Wish I could attend your talk, CD - it sounds interesting.

    For me, the most important thing is to be able to achieve something - even if it is less than I had hoped to do and I try to have goals for most days. Overall, I probably achieve as much now as I did 10 years ago before AF came along - it just takes longer!

    Best wishes with your talk.

  • Good one - thanks - having goals but needing more time to achieve them than before AF.

  • Wow. I would also love to be attending your talk. Please come to NI so Finvola and I can hear you!!!! For me, acceptance and not fighting against this diagnosis has been the most helpful thing emotionally. On a practical level, finding ways of coping during episodes and looking for any pros during episodes have helped me eg I go to bed early (as most of my episodes are in the evening) and I use this time to read to and chat to my kids. Before when I was well, I would not have spent this quality time. Talking openly with my family and close friends about all this has helped me. This forum has helped me and the blessing of a couple of close friendships I have developed through this forum. And making the most of my time in NSR every day to go for walks, do shopping, get work done etc has helped me. So in adapting to a new way of life and an appreciation of NSR has helped me make the most of every day. A major part for me of working with arrhythmias has been to learn to control my fears.. I used to be scared to go asleep in case I would go into a dangerous undiagnosed arrhythmia or my heart would stop. Challenging these thoughts and looking for evidence to prove /disprove them has been difficult but necessary for me.

  • Thank you so much Vony - may I quote you - this extract in particular

    For me, acceptance and not fighting against this diagnosis has been the most helpful thing emotionally. On a practical level, finding ways of coping during episodes and looking for any pros during episodes have helped me eg I go to bed early (as most of my episodes are in the evening) and I use this time to read to and chat to my kids. Before when I was well, I would not have spent this quality time. Talking openly with my family and close friends about all this has helped me.

    And....

    A major part for me of working with arrhythmias has been to learn to control my fears.. I used to be scared to go asleep in case I would go into a dangerous undiagnosed arrhythmia or my heart would stop. Challenging these thoughts and looking for evidence to prove /disprove them has been difficult but necessary for me.

  • Gosh of course you can if it will be of help! Do you think you will post a video or a written copy of your talk? I would love my family and friends to hear it but no pressure xx

  • I'll see how it goes and if well received, I maybe I will post my notes? Thanks for your help. xx

  • [quote=What have you found to be the most helpful thing you do which helps you in living with AF as a chronic condition?]

    Firstly accepting that having AF is not the end of life as I know it, it can be managed.

    Secondly, I try not to get stressed about anything in life, I let it go and stay calm with the help of breathing exercise if need be. AF feeds of anxiety if you allow it to.

    Thirdly adjusting my lifestyle including eating a very healthy diet, taking daily exercise, not pushing my body too far so that I become overtired, getting plenty of sleep.

  • Concise and to the point, thanks.

  • I would always try to sleep an episode off if possible. And to remember that Bob says that AF is unlikely to kill you. Oh, and YES I am taking the anticoagulant so I should have a good chance of protection from a stroke.

    My main trigger is stress so that needs to be avoided.

  • I agree with vony that it helps to accept the situation and I also get comfort from knowing I have done everything in my power to improve my chances of a good quality of life. So,I keep my weight/diet under control,exercise outside in the fresh air if I can, keep up with all health checks, take medication intelligently ie at the right time and not too much or too little. I keep on top of GP and EP appointments and dont allow appointments to get lost in the system. I question medical advice and do my own sensible research. In short, I have put myself in control . Luckily The health professional s have responded well to this and always give me as much information as I ask for.

    Having done all this I then try to forget about it as much as is possible.

    I hope your talk goes well. Who is the talk for? X

  • Feeling in control I think is key. Thank you for replying.

  • Hi CDreamer, fortunately my AF is not too bad and tends to occur when I wake up at 2 in the morning with it. That's when I resort to my Flecainide (I only take it as required) taking 2 tablets straight off. I try and avoid the triggers, which for me are:

    - avoid stress (easy say but not easy to do)

    - over tiredness

    - alcohol (fortunately I rarely drink but enjoy a glass of wine with a good meal on occasions)

    If I know I have broken some of my rules I take a prophylactic flecainide before I go to bed and that often does the trick.

    These I know help me too:

    - omega oil supplement

    - ubiquinol and co-enzyme Q10 (also recommended as I take a low dose statin)

    - a teaspoon of flaxseed oil each day (just hold your nose when you swallow it - its not too bad!)

    Like buses, my AF comes along in groups, I can go for weeks with nothing and then get a run of incidents - usually because I have become complacent.

    I have not found carotid massage overly helpful, but have never tried the breathing exercises mentioned above so will try that.

    I was told by the cardiologist that my AF is 'supra' (from the 'top') and would not cause a heart attack and that the biggest risk is stroke. I have a good BMI and stay fit to minimise that risk and sometimes take a low dose aspirin.

    Hope that helps someone?

    Regards,

    Kevin

  • Very sensible suggestions, thank you.

  • Oh another one important one for me is.... People who say "oh yes I had palpitations once as well when I drank too much coffee" or "have you tried stress control or deep breathing" when they find out you have cardiac arrhythmias.. I have developed an inbuilt switch off button in my brain for such ignorance. In my experience, when people find out you have an arrhythmia, they all of a sudden unleash the inner EP!!! 😂

  • 😂😂😂

  • I second that!It used to upset and annoy me so much,now,I tell them to look it up on google or on here,rather than my getting into it!

  • for me, of importance for my permanent AF - dabigatran, family support, good sleep, minimising stress, lots of exercise, healthy eating- fruit and veg, low alcohol intake, music (choir, ukulele). Good luck with your talk. Can you share your presentation on this site after delivery coz we're all very interested?

  • Get your medicine at a level that works for you, If you don't feel it's doing its job for your AF then see what else is available and keep looking with your medicinal professional 's until you are happy 😊

  • I think that not letting it dominate my life excessively has been an asset. It is all too easy to stay at home and be too scared to set foot outside, but AF can in fact just take a back seat and not dominate all the time.

  • switching to a diet with food with high Potassium and avoiding any processed food, caffeine

  • I keep reading and researching about the icky trade-offs that may or may not help. One issue I cannot emphasize strongly enough is to pay attention to the side effects of the drugs. When I was on Metoprolol 2x/day I became more and more depressed with frequent suicidal thoughts. Then I found this is a side effect for some of us. But the doctors discount it because it is less frequent. Pressing to change meds changed my mood dramatically. Unlike a broken arm, or an inflamed appendix, I think you cannot simply put yourself in the hands of the doctors and get a great result.

  • That's fantastic that your doing a talk 😊👍🏼, I have only felt it once but that was enough for me . It's an awful condition to have and very frightening when it comes out the blue . Good look with your talk 💗

  • So, I'm wondering...if you have failed ablations, meds aren't doing much good, and you have had no previous open heart procedures have you ever considered the Convergent Procedure? I know someone who had Afib for 13 years and has had no episodes for 5 months now post op. I also spoke with someone who had a stand alone maze procedure by a heart surgeon named sp. Gerdisch who is free of AF after 7 years. Just makes me wonder if cardiologist are willing to seek out options for those of us who suffer from AF.

  • Hi CD, I seem to recall the organisers of this Forum asked a similar question a while back.

    Your question I have interpreted as not what helps reduce AF but given it's there what helps you most bear the load. I hope I got that right, in which case I will have to give you two answers first and foremost I got through the early days of anxiety and now regular lean on my Christian beliefs, which have become more prominent and are a great comfort - I accept if you have no faith this is easy to dismiss as irrelevant but all I can say it has been a Godsend (pun intended) for me.

    Second and again this is individual I am afraid, I have always been interested as a layman in medical matters, so I have pursued my AF research in a de-personalised way with great interest, including trying to help on this Forum - this helps to rationalise things & take the pressure of me and my personal struggle to get off the pills.

    Good luck with your talk.

  • Thank you, you did get it right - it is very much the psychological angle I am coming from, which is not covered by doctors. Given you have AF, with all the accompanying anxieties, how do you cope? I have my own strategies, but as is obvious from the wonderful replies, no one thing works for everyone.

    I am interested in passing on what has helped others cope and a religious faith and belief systems may be one of them.

    I would never dismiss a faith as irrelevant - it is very personal.

    Thanks for you best wishes.

  • Good luck with the talk. I think what has helped me most over the years is that the cardiologist who gave me the diagnosis put great stress on the fact that I would not die from AF. As a result when I went into AF I was not worried and rested until the episode was over. I am now in permanent AF and live a normal life doing everything I did before.

  • Join this forum would be my recommendation. Do hope the talk goes well. I would love to hear how it is received by your audience.

  • Thanks, it's not until November but I will give you some feed back.

  • Avoid alcohol and black coffee.

  • I think that the main thing that has happened to me since I accepted instead of fighting against the fact that I have a chronic condition is that I listen to what my body is telling me. Sensible diet no alcohol early to bed ignore stress and just enjoy this beautiful world while I can! :-) :-)

  • Talk! Don't keep it bottled up. Share your experiences, they may help someone else feel less isolated. To me too, my faith has helped me through this and I believe in Gods hand on my life. This forum is so important, the wise words of Bob always resound, AF is not fatal, it is not going to kill you. In fact, although I am not a total health freak, I have become much healthier as a result of this diagnosis. I try to make better diet choices, and now exercise. Try to visit the gym 3 times a week. Something I would of never considered. X

  • What helped me once I had a diagnosis was that several of my family including my father had AF and their attitude of it being a trial but nevertheless trying to get on with life was an example to me. Another thing was having other conditions which gave me more problems than AF did (does not apply to most people I know but possibly being aware as Dr Seuss says of others being 'ever so much worser than you' in some way can help).

  • That resonates for me as well, thanks Buffafly. x

  • Also forgot to say that my mother had been a nurse aid during the war, caring for airmen with terrible injuries, and therefore considered giving into anything less than an amputation or extensive burns to be malingering or hypochondria so I was encouraged to be tough.....

  • Hi CD, hope it goes well. I am probably repeating what has already been said but don't have time at the moment to read them all.

    For me it has been to conquer the fear or try to as best I can

    Avoid as much stress as is possible

    Avoid eating late as this is a real no no

    Not to let it rule my life and do all the things I can albeit a lot slower

    Stay positive if possible, negativity doesn't help and it makes it easy to sink into depression

    Good luck CD

    BRENDA🐝

  • For me it was the psychological aspects that appeared not to be recognised.A cardiologist with a sense of humour said "don't let it beat you"I had a depressive reaction in accepting the diagnosis and how it affected me physically.

    Having the facts and listening to your body,being realistic about what you can physically do.Learning how to manage symptoms and allowing yourself time to adjust or just get used to it! Being unable to continue as a professional sports coach in the longer term took some adjustment but having other things which were less physically demanding but give a sense of achievement seem to help. Yoga for the breathing and to help with sleep disturbance.

    It's not just one thing it's a combination and you use whatever works.

  • Thank you, it is many things I found and taking time to accept you can't do what you used to is one of the hardest I found.

    I do hope these posts have helped a lot of the newbies because it is so hard and scary in the beginning.

  • Quite simply I still have some 25mg attenolol beta blockers which I don't take all the time but if my heart rate gets High as it does somtimes I take just one tablet as needed and that then brings my heart rate down to between 60 & 70 BPM. That works for me. But also have to allow longer to do things as get tired easier at times.

  • CDreamer I have recently discovered that some of my most troublesome symptoms relate to blood pressure crashing down when I'm in AF. Most episodes occur at night, and can carry on into next day and longer. I managed to get my act together to check BP when feeling that all I wanted to do was lie down, and found that BP was around 80/60. Normally in NSR, it's 120/60. GO not interested. Of course, I've been prescribed Biso. GPs don't want to reduce dose, don't seem to recognise my episodes relate to vagus nerve, and say reducing Biso may increase frequency of episodes, already about twice a week. However, i have recently discovered that hibiscus tea reduces BP, and i have been have 2 big mugs a day. Since eliminating these, I am better, but still have episodes of AF, usually much less troublesome. I am being treated by a functional medicine nutritionist at present, while waiting for ablation (since January). I am chronically 'digestively distressed', don't yet know why, but have had a series of inflammatory conditions over last 8 years requiring pharmaceutical treatments, apparently. ?toxic overload?

  • I see a nutritionist as well and have related GI symptoms. Everything is connected to everything else and diet, nutrition, lifestyle and psychological factors all play a part.

    Those are the parts that we have some control over, without resorting to pharmaceuticals.

    I have several Autoimmune conditions for which I take a heavy load of immune suppressants, I can't take any heart meds at all other than anti-coagulation so it's a case of needs must so finding ways to cope with episodes so I am always interested in different approaches and ones the Doctors don't ever cover.

    I have autoimmune with Autonomic dysfunction which I have talked about a lot in other threads - have you looked at the STARS page on the AA site re low blood pressure and other autonomic conditions? Some really good info.

    Interesting abut Hibiscus tea - I will remember that one, thank you.

    The only good effect of Biso for me was that it helped to stabilize my BP as mine would drop to unreadable in AF, which was a little worrying! It's behaved itself recently though so Vagal Nerve self hack seems to have worked!

    Thank you so much for taking the trouble to reply and best wishes CD

  • CDreamer Thanks for your lengthy

  • CDreamer thanks for your reply. The taking control is so important. Until I did that, I was anxious with much higher BP and found coping with the limitations of orthodox medicine very difficult. I've now changed my diet to maximise anti-inflammatory elements, and nutritionist is guiding me through the complexities of AIP. Every little helps! Best of luck with your talk. If its to medics, do emphasise the importance of psychological factors. And possible links to autoimmunity etc. In my case, polymyalgia, low thyroid, lichen planus, carpal tunnel, and massive family history.

  • What a fantastic thing to be doing, CDreamer!

    To me, like so many others I'm sure, the diagnosis (with accompanying symptoms, meds and side effects) came as a bolt of lightning, tearing apart my life and expectations. To be honest, nearly a year on I'm still coming to terms with it. And I have other conditions that are much more debilitating (though usually less scary!).

    But I'd say what is helping me cope so far is:

    1. My faith in God. Knowing he is with me (and us all) whatever I face, day and night, transforms the way I feel and the way I see things.

    2. My husband, who loves me and puts up with me so wonderfully through it all. The good, the bad and the ugly. Trust me, I have lots of ugly! I feel very thankful to have someone who cares, even if he doesn't really understand. Which brings me on to...

    3. You guys! This AF forum is amazing. You, CDreamer are one of the names I look out for - names I associate with bringing good sense, reassurance, a smile :) And everyone who contributes with their questions or replies is so helpful - I've learnt so much from you all, but also you make me feel I'm not facing this alone. I can't express enough how much that means, what a difference it makes. This forum is a genuine community. A family, in many ways! There's been long spells of time I haven't been well enough to log on (due to non AF stuff) and I truly miss you lot.

    4. Learning to live in the moment. Appreciating what I have. Before all this, I spent my life looking ahead - in both anticipation and anxiety - never really appreciating the here and now. Now because of limitations on what I can do and a very real reminder of mortality, I'm learning to make the most of every moment. Savour it. Be thankful. Appreciate the million blessings I have in the form of life, love, family, friends, breath in my body, a stroll in the sun, a hug from my husband, a funny film, a heartbeat that keeps me going... Making the most of the good moments means I don't lose the life I have, hopping from fear to crisis to fear!

    Sorry I've rambled so long. Hope it helps... and hope your planning and prep for the talk goes well :) xxx

  • Thank you so much, this community has helped me so much and I too am grateful for all the support.

    I am so glad you you were able to articulate what has helped and I will certainly use many of the comments to hopefully, help others. I think we all learn so much from each other and just to know that others are going through this stuff and not only surviving, but thriving is important.

    Thank you for sharing.

  • Hi CDreamer

    A "younger" perspective, now 46y but with AFIB from about 23y.

    1. Faith in God

    2. Knowing it won't kill you.

    3. There is always HOPE!, during my AF journey the doctors have told me about 3-4 times "you're in trouble" and then "let's try this". There is always new meds, technology, information, and procedures.

    4. Keep breathing (yes really, there is research about long deep breaths compared to swallow short breaths) and follow a balanced healthy lifestyle

  • Thanks Jancon- I'll add Hope - good one.

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