Very new to this - so what next?

Hello all, I’ve been reading with great interest the posts on the forum and find them very useful - especially from people with similar experiences and background.

I’m 54 and had my first AFib episode which lasted around 2 hours about 6 weeks ago, ended up in A&E and of course had no idea what was going on at the time. I have seen a cardiologist who diagnosed AFib from the ECG and had several tests, CT, Echo, 24 hour bp monitor. All are normal and my CHADS VASc score is 0 so not been put on any anticoagulants and now been discharged by my Cardiologist. He has given me Flecainide as a PiP and told me to modulate Caffeine and alcohol but return to see him if frequency of episodes increase.

Now I’m thinking ‘what next?’ do I just follow his advice (and that of my wife!) and go back to normal - work (with some stress associated), continue healthy eating, moderate exercise, occasional social alcohol and coffee - or make some changes now to reduce the likelihood of future episodes. I’d like to be more certain what the trigger for the episode was! I was just coming out of a bad chest infection at the time but coincidence…?

I certainly don’t feel as good/fit as I did prior to the episode - get tired more quickly - the more sedentary lifestyle since & removal of caffeine also I’m sure not helping.

Any thoughts appreciated!

10 Replies

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  • Welcome to the club that non of us want to be a member of.

    Triggers are different for everyone, I have no idea what triggers mine, but non the less I have cut out caffeine (used to drink loads of coffee) Alcohol , especially anything with sulphites but I do sometimes have a G+T if out with friends

    Chinese food is a no no due to all the MSG in it.

    THey may not be triggers, but I'm not taking the risk, being in AF is horrible so if I can reduce the chances of getting it then I will.

    I'm overweight but working on that, I'm so much healthier than 15 months ago when I was first in A+E with my first bout.

    Whats next? who knows? you may never have another episode although in all likely hood you will. It could be today, it could be in 5 years. If you do have another one though I suggest you push to see an EP, they are the guys that know the best course of action.

    Exercise as much as you can, but listen to your body, don't be frightened to do it though, AF won't kill you.

    Read as much as you can, knowledge is power and all that, and ask us lots of questions.

    Good luck with your AF journey

  • Thanks Mike good pointers - had been thinking that Caffeine definite give up for good, and anyway decaf coffees are much better than they used to be! However your point about sulphites is an interesting one - is this based on something e.g. that wine is more of a risk than say beer?

  • Yep, cider is a no no, it's full of sulphites, white wine is probably one to avoid too, red wine is not as bad, same for beer. But the old adage everything in moderation is also good to use here.

    Absolutely right about the caffeine free alternative, I do drink caffeine free tea, and Yorkshire, Saintsbury and Aldi are all good.

    Aldi caffeine free instant coffee is really good and I can't tell the difference tbh.

    Some of those pods are good too, the nespresso caffeine free is lovely.

  • It's quite possible that the chest infection was a trigger for your AF episode - but who knows? My own view is that you can drive yourself bonkers trying to identify triggers for AF.

    My thoughts? Do do the things that we all know we ought to really (healthy eating, exercise) and don't do (or at the very least moderate) the things that may well exacerbate it (caffeine and alcohol). Avoid stress if at all possible (easier said than done, I know).

    I do know (as do we all here) how difficult it is in the initial period after one is diagnosed with AF, but if my own experience is anything to go by once you have come to terms with the diagnosis and have a treatment plan in place it does get easier to get on with life.

    So yes - do as your wife and the cardiologist advise! LOL

    Carole

    PS Have you read the very helpful literature on the AF Association web site here?

    heartrhythmalliance.org/afa...

  • Thanks Carole v helpful - my focus currently is on being clear how I would approach another episode. I am also planning to restart the exercise next week. Alcohol is a minor challenge - I'm off it for 3 weeks now but trying to imagine meals out in future without a nice glass of red is a tough one!

  • Yes. Know where you're coming from on the (red for me too) wine front. I have no evidence that a small glass of red triggers an episode for me and so I have a small glass (1 unit) most evenings. However I am me and you are you so it might not be OK for you. Vive la différence! I have, however, given up coffee as I think it increased my heart rate and I used to drink quite a lot. I expected to miss it, but don't.

    Re - next episode. A plan is a good idea. Mine is: take another dose of bisoprolol, sit it out for a couple of hours and then go to A&E if no improvement. This is what I was advised when last there. But I live alone and I think that's scarier than if you have someone with you. I also keep a bag packed with basics for a stay in hospital.

    in general terms I guess the best preparation is to become as well-informed as you can (see AF Association link mentioned before). Knowledge is power, though a little knowledge can be a dangerous thing.

    Fingers crossed, you may not need any of this for a long time, if ever!

  • Hi Gezp, there are probably 3 types of person no1 I am not letting AF control my life and I am going to continue as before and have an ablation if necessary. No 2 I'll take a few sensible precautions, hope that is enough and see how it goes and no 3 I accept this is an early warning and without procrastination I am going to look at all areas to stop it.

    I suppose all these types have some advantages so the question is which type is you?

    I was diagnosed first at a similar age and given Flecainide PIP, I took little action as I knew nothing and didn't feel it was too important. The AF did get worse and as I am a type 3 above I launched into a huge learning exercise seeing medics and Alternative Practitioners with a good dose of anxiety. Three years on from my bad patch starting on a regular 200mgs/day Flec, I have a very changed lifestyle including supplements and low Gluten/sugar, minimal alcohol/coffee diet. I am a lot healthier overall and enjoying a full working day life with no AF for 3 yrs.

    In summary my advice would be take more action early, be prepared for a big learning curve and be persistent, is it worth it well yes in my case....Good Luck.

  • Yes, I found it scary at first. I had my first recorded incidence only a week and a half ago, and as I am away for my grand-daughter's birthday next week, I will not be seen for scan and stress-test until June.

    I am 67, and recognise that I must have had some AF instances previously which went unrecognised. A week last Sunday I was very stressed, performing hard physical work, and ended up in AFib for about 8 hours. That left me as weak as the proverbial kitten, and worried sick about a heart attack. I now know that it was no such thing, and not immediately life threatening.

    I have since bought the Kardia EKG gizmo for my mobile phone, and at first I used it a lot, but am now not bothering so much. I have been to a beer festival where I had enough beer to be drunk and thoroughly enjoyed it. I still have my one coffee a day mid morning, and last night I had a Schezuan chicken dish from a Chinese takeaway. So far, the only consequences have been disturbed nights (anxiety?) and a pounding chest occasionally, in normal rhythm (anxiety?) .

    I am very much of the carry on and do your best to cope type, but strongly believe that knowledge is power. Fear can be conquered by a thorough knowledge of the risks, and actions that might mitigate them. I will take the advice I am given, but only with due consideration, not blindly. Just sitting typing this, and considering my new 'condition', is making me aware of my heartbeat. I will have to adapt to that, and I expect that familiarity will eventually calm me down and let me cope.

    I would like to know what my 'triggers' are, if any, and I suppose that is one reason I have continued with coffee, beer, wine, and Chinese food (not all at once!).

    Good luck with your new status, and I hope that the drug regime you end up on works well for many years.

  • I'm sure most of us on here are familiar with the anxiety bit - even after my scan results turned out fine I still worry about another AF instance and how I'll manage it - I guess as has been stressed on here with time and knowledge this will ease. What are your views on the Kardia - I have bought a BP monitor which will detect irregular beats - danger with tech use is it can make you unnecessarily anxious

  • My son thought it might make me more anxious, but I found the opposite. A few times I have woken in the night, and tried it out, but it's difficult to use while lying down and I've had mixed results. However, I have always ended up reassured that I'm still in NSR and with lowish heart rate. I've had one event in the night that showed AF, but it didn't last very long and I think it was actually me fumbling the finger contacts.

    When sitting upright with your forearms on a table it is very easy to use and gives a very clear trace for the full 30 seconds. I find that very reassuring. Others always want to have a go and are delighted to see a 'real' ECG result. Much better than the pulse rate app on the phone which relies on the colour changes in your finger with your pulse, although that is fine if all you want is a straight pulse rate count. I doubt that would be meaningful while in AF.

    If I do have another serious AF event, I hope to be able to catch it and show the evidence once I get to see a doctor. It's a shame it costs so much, and then after my free month of 'premium' support, a potential £10 per month. I won't bother, you can email your latest trace, and if you do that every time you won't need their storage.

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