Learning to live with AF

I am new to the Forum (hello Forum) but not new to AF - I had my first attack over two years ago on the day of the Royal Wedding, which is a guaranteed way to make something memorable... I remember waking at 5am to realise I had no proper pulse and being mildly surprised that I was alive.

After some persuasion (I think he wanted to watch the ceremony) the Other Half carted me off to A&E, and PAF was diagnosed. My heart dropped back into rhythm about 5pm, while eating a chicken sandwich, so I am wondering if I have stumbled on a new cure.

In between then and now I tried to take advice, cut down on alcohol, gave up caffeine, and even lost a couple of stone despite my serious love for chocolate. I was also put on 1.5mg of bisoprolol a day. Two years on, I had put half a stone back on and, being honest, was having an extra glass or two of wine again. It doesn't take much to convince me I'm immortal, but the second bout of AF shook my belief severely.

Oddly, this time I was more afraid - I think because it hit home that it wasn't a one-off, and that I wasn't 'cured'. That I am going to have to take more care. That I'm not 16 any more, and I'm going to have to cut back on the chocolate. My heart rate goes up to around 170 during an attack, which is pretty scary - I was getting pains in my arm and the odd twinge in my chest and yes, I did worry that something was going to explode and the wheels were going to fall off the bus in a permanent sort of way.

The doc has put me on 5mg of bisoprolol now - I felt a bit light-headed at first, but am coping okay now. I've not been put on warfarin - I was assessed as low risk, though I see that many here advocate it anyway. Should I tell the doctor I disagree with them?

The AFA have sent some great advice which I have to look through and try to put into practice. I am wondering how everyone manages to live with AF though. How do you get past the fear that the next thing your heart will do is say 'haha, I quit!', and get on with life? I know I have to, but would really appreciate suggestions from everyone.

15 Replies

  • Hi,

    Sorry to hear you have become one of us (AF sufferers) but pleased you have found the forum. How to get past the fear - mm a tricky one. I guess the answer is that you don't - not totally anyway. The longer you go without an episode the more the memory of the last one fades somewhat and you do get some confidence back, but any vague symptoms and the fear returns.

    It helps generally that AF is not life threatening in itself but not sure during a big symptomatic attack that you truly believe that. I have felt somewhat safer now that I am on anticoagulation (Rivaoxaban). I don't know anything about you other than your post but I would check out again with your doc regarding anticoagulation even though he has said you are low risk - better safe than sorry.

    You could check your own score by taking the stroke risk self assessment on the AFA website or call the AFA help line for some advice. If your doc suggests using aspirin then challenge it as it is not a protection, you need Warfarin or one of the new drugs - Rivaoxaban, Dabigatran or Apixaban.

    Living with the fear is a challenge, read up on AF and keep asking loads of questions on the forum, it all helps. If the fear is controlling your life as it has mine I freely admit, then perhaps some cognitive behavioral therapy (CBT) may help, ask your doc for a referral to a CBT specialist.

    Good luck.



  • Thank you Dee - I will check my score, I am very much a 'better safe than sorry' person and I don't want someone telling me 'whoops, we didn't expect that' after something bad happens!

    I see there are a lot of interesting new drugs out there, and I will keep asking questions, I promise! It's great to meet you.

  • Hi eatsalottie, First off... Welcome to the forum, Although I wish you didn't need to be here, I'm glad you found us.

    Let me address the anticoagulant first. Most here are on some type of it. I personally do not agree with the Chads2 method of determining stroke risk. In my opinion (and many specialists now) the risk of a stroke in someone who has AF is there whether you are 15 or 75 years old. While all the other conditions could increase that risk, If you have AF the risk is still there. The are some here who were told to take aspirin because they had a low risk and later suffered a TIA or Stroke. If you have spent time on the main AFA site, you have read that AF patients have a 5 time greater risk of stroke. Some advise that was given to me many years ago was:

    "You can always stop taking the anticoagulant if you don't need it... BUT you can't UNDO a Stroke if you Did!"

    That has always guided me and made the choice much easier. The problems or inconvenience caused by taking an anticoagulant are nothing compared to the problems that came with a stroke.

    I'm glad the you realized your statement about being a one-off and cured was wrong. I have spoken to 1 or 2 people who had only one attack and never again verses thousands who continue to have attacks. It is normal to have 1 or 2 years between attacks in the beginning. AF is a progressive condition and over time will increase in severity and frequency of attacks. Also there is no cure by just taking meds. Meds can only either control and make more tolerable the attacks but not cure them.

    Speaking of meds... You are taking a beta blocker which is designed to slow the heart rate which can make the attack less severe but does not stop them from happening. They are part of the Rate Control family. There is also other types of meds called Rhythm Control. They attempt to *hold* the heart in rhythm which stops the attacks from happening. They are not 100% effective but do help many either stop the attacks or reduce the frequency of attacks. The bad part is that as AF progresses a higher doasage or stronger meds are required to control it.

    There are also procedures which can *cure* AF.

    You said that the AFA had sent you some great advice. Please spend some time looking through all of the info on their main site atrialfibrillation.org.uk/. There is a wealth of info there to help understand AF, it's symptoms and treatments. The more you know about this condition, the better your outcome will be. These folks have ben dealing with AF for a long time (in most cases longer than most Drs), so having this understanding will help when a Dr is telling you something that doesn't really fit with what you have read.

    Again, Welcome to the forum and please ask any questions you have. There are many here who have been dealing with AF for a long time and have a very good understanding. I have 13 years of it.


  • Hi Tim!

    Thank you so much for your advice - I'm definitely going to talk seriously to the doctor when my check-up comes round in three weeks. In this situation, I think the local GP is probably far less knowledgeable than the people on this site! I will ask about rhythm control drugs as well and will look through all of the information I can find. It's great to have such a good forum and so many kind and supportive people prepared to share their experiences.

  • Hello there

    Sorry that you have joined us ..... [in the best possible way !]....... shame any of us are here but a better more supportive group of people I've yet to come across. AF is a darn nuisance and because it affects our hearts it presses the panic button on so many levels; but you can lose that scary feeling with knowledge...the more you know the less of a stranglehold AF has on you.

    I've had AF for 8 years now but had had it much longer ..... am now on Rivaroxaban ( can't take Warfarin) and feel so much better now; knowing that my risk of a stroke has been reduced . For over most of that period had only been on aspirin and from listening to people and reading I really should have been on an anti coagulant much sooner.

    (Write down your questions ....I have to as my mind goes on strike ...& forget some ! )

    With Rivaroxaban I don't need to have my INR done at all...can eat anything I want but keep alcohol down to a bare minimum....special occasions only . All I need is a kidney function test after 1 month ...then if that's ok no more for 3 months. Just had my first test and am fine . Aspirin is a platelet altering drug.... and does little to help anyone with AF.

    Please read /ask about AF ...it truly is so important to know all you can. Must sound a bit daunting but it truly does help. My life is getting back to * normal...whatever that is * and it's amazing how quickly you can grab some control back from its clutches! So much is in the pipeline regarding future treatments ...all good too. If you Google Dr. Sanjiv Narayan & listen to video interview.


    that's the full link but it will come up if you just Google his name.


  • Thank you Nikki! I am writing 'Rivaroxaban' down on a pad here and will surprise the doctor with it when I see her in a couple of weeks. I would love to get to the stage where I know enough not to feel so scared - actually having found this forum and the lovely supportive people here has helped a lot in itself! And now I have to go and do a LOT of reading I can see. It's not a club I'd have asked to join, but what wonderful people I am finding...

  • yes! they really are a smashing bunch. Just what we need when we AF rears its ugly head.

    Pradaxa and Apixaban are other new drugs ..... worth a mention to your doctor/cardio man .

    the only drawback of the newer drugs are that as yet they don't have a reversal agent .... but since they reduce in your body fairly quickly I decided the risk was outweighed by the pluses.

    Quite a few are on the newer drugs on here so you will find out how people get on with them .

    The one thing to remember is to listen to your body .....and do try yoga...relaxation....reiki....meditation...they all help to de-stress you ....and the breathing exercises from yoga are well worth doing ....the heart reacts very favourably to them all.....and it's fun !

    you will be fine ...we all felt like you do now....been there done that got several t shirts ...:)


  • Thank you... And yes, this group is just the tonic I need! I will talk to the doc about the new drugs, they sound really good. My dad was on warfarin and didn't do so well, so hopefully I will be able to argue my case. I will try yoga, and meditation. And I have already told my hubby that his favourite hobby, stressing me up, is going to have to end lol.

    I have my fingers and toes all crossed, and am going to take all this great advice. Where do I get the t shirt? :)

  • Hang on I'm sure I have a spare one lol ! :)

  • G'day Eatsalottie,

    I was diagnosed with paroxysmal atrial fibrillation in Jan 2010 (at age 65) . Within 7 hours of onset I was in A & E and had a diagnosis. I was then started on the medication approach which I'm still on and on the same doses as originally put on. I've been healthy all my life and apart from DIY carelessness have only been in hospital once for a non cardiac event (removal of right knee cartildge).The first 12 - 18 months was a very rocky road, getting used to the side effects of Paf and the medication - BUT- then I started to analyse why. Now I'm one of those weirdos who can be in AF and not know it - BUT- every now and then I can feel it, usually a squadron of butterflies in my chest or a mob of octupus wriggling away .... and I feel dreadful. More often I feel palpitations, but, not all the time.

    I eventually associated the onset of AF with digestive issues, and so using the services of a Nutrionist (which suggested I was marginal IBS) and eventually Homeopathy I have now got my life back and although still remaining Gluten free, wheat free, oats free etc. I can return in many other ways to my old eating patterns.... and alcohol too, thank god! That said tongue in cheek I've made lifestyle changes - removed stress as much as possible (I am a bus driver), I have retired, try and exercise, still diet, eat smaller quantities, cut back on all my booze AND NOT EVEN THINK ABOUT AF NOW.... I'm 69 in Sept 2013. I now have a couple of part time jobs, one ongoing throughout the year, one seasonal - both involve driving mini buses.

    I still holiday in Australia and no problems with the 21 hour flight. Been up and had trial lessons flying a glider, on my last trip to Oz, I climbed to the top of the Sydney Harbour Bridge (about 500 ft.). I am still now able to pass my PCV licence medical each year !

    All that said - I have some residual issues - tiredness and occasionally suffer from extreme cold in hands, sometimes feet too. Tiredness I blame on two things, one - mentally I feel 49 and so my 49 year old mind tells me I can do the physical things I actually did when I was 49 ! I can't. Partly AF and partly my physical body is slowing down. Two, the party bag of drugs I'm on ! The cold .... well I've now learnt to listen to my body ... and use my home blood pressure monitor. I've identified the onset of coldness (I blame the beta blockers) with an sudden and inexplicable increase in blood pressure - both systolic and diastolic - at the same time my heart rate drops to as low as 46 bpm. Remedy - go to bed with a hot water bottle and sleep for a couple of hours, wake up - back to normal and I'm back in party animal mode again. Interestingly, this always and only happens when I'm at home in resting mode. I've never had anything like this when working. Never ever.

    So there ya go, hope all this helps and good luck.

    May the force be with you.

    Aussie John

  • Hi Aussie John!

    Thank you for writing - it's really interesting that you have found an association with diet. I'm still trying to figure out exactly what triggers my PAF. My first thought is overdoing it, so I have promised myself to back off a bit but as you say, mentally I feel a lot younger than I am so it's hard to get the message through my own head!

    I've been up the Sydney Harbour Bridge too, but before the PAF came along - maybe I will get the chance to go back and do a repeat visit one day! The view from the top is fabulous. It's great to think that AF doesn't necessarily have to put a crimp in everything we do.

    I'm so glad you are managing so well, good on you - I take such a lot of encouragement from the fantastic way others in this group are coping. Good luck to you too.

  • Rivaroxaban - no reversal agent - I was speaking to my Mum's cardiologist yesterday and although it's working for some, it's still a long way off becoming mainstream he told me.

    Just thought I'd mention it.

  • Thank you Parco - one great thing about a group like this is that you get all of the information!

  • I was on Warfarin after my initial diagnosis (Feb 2010, although I'd had paroxysmal AF for about 15 yrs before that without realising what it was) and was badly affected by nausea. I now take Synthrome, a synthetic mimic of the warfarin family, and have no side effects. My anti-coag nurse speculates that I was reacting to a dye in the tablets of Warfarin!

    Like you Eatsalottie, I had a big attack on the day of the Royal Wedding. It was hot that weekend, wasn't it? I find high temperatures are a trigger, as well as stress and dehydration.

    Yes, I went through the terrified phase after the denial/invincible stages. Now I try to be sensible and accept that I need to pace myself.

    I'm about to have my third ablation (antibiotics during a bout of pneumonia in Feb this year flipped me into AF again) and look forward to feeling so much better in a few weeks' time. Even when not symptomatic, AF can make us feel below par and lacking energy.

    Good luck with your dealings with the medical profession!

  • Thank you Geordielass! Synthrone sounds interesting... Haha sounds like A&E was stuffed full of us AF people on the day of the Royal Wedding - it was a very hot weekend, and I had been working like crazy because one of our daughters was staying with her mother in law, so I was trying to keep the house spotless, garden pin-neat and go out with them during the day, while somehow fitting in my work as well. I am beginning to realise that I am due an attack of AF if I find myself congratulating myself for having fitted in everything on my 'to do' list! Pacing is something I have to get the hang of, I think... Best of luck with the ablation!

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