Just need to know others are there

[Baker51]

I was diagnosed with paroxysmal atrial Fibrillation 17 months ago and have had little information or support from my GP surgery. Just a couple of phone consultations. I had to ask for the information I needed and being given a website to read didn't help as it didn't tell me anything I didn't already know. What I need is how to live my life well, any precautions I need to take and prognosis anyone got any tips or advice?

[LAPHM]

Hi. I was diagnosed with PAF earlier this year after four years of intermittent problems which could never be pinned down as my heart had always returned to normal by the time I got anywhere near an ECG or even a doctor. I think they had started to think it was psychosomatic. But at last an ECG at the right time identified the problem immediately and I was started on rivaroxaban and bisoprolol, which needed tweaking but things now seem fairly stable. I do still get the occasional episode but it's nowhere near as strong and often fades away very quickly. Knowing what was causing the palpitations was helpful in itself and being reassured that it did not mean that I was about to have a heart attack, and tests have shown that my heart is basically very sound have helped me to keep calm and just ride out any episodes. I try not to worry too much (easier said than done when you live alone and have no close family), have started taking some much needed low impact exercise and realise that this is a pretty common condition. Everyone's situation is different - the causes, symptoms, personal support network and temperament - and I don't have any special insights other than to listen to your own body and make sure that you are told and understand the reason for the PAF (which means getting various tests done - and you might need to be very firm with your GP about getting a referral for these), although it is possible that, like me, there is no known cause. Probably just an ageing heart.

I don't know how helpful my ramblings are, but I am an Olympic class worrier by nature and have found a level of acceptance that this, for me at least, is not a life-changing condition. If you have any specific questions for me do please just ask.

[richard_jw in reply to LAPHM]

I have similar issues. I did not realise that the reason why I was feeling so awful was a very irregular heartbeat from time to time. It was found by a triage nurse at A&E, but had gone when they did an ECG.I talked to my cardiologist, and he suggested the Kardio mobile. You carry it around, and use it when you get an attack. Then email the ECG it produces to (in my case) the cardiologist. In your case it could give you an extra level of assurance.

[gladliz]

I was diagnosed with PAF 10 years ago, during a stressful period in my life. It was very sudden and after 20 minutes or so of erratic behaviour I called an Ambulance and spent some hours in A&E. Given a selection of meds and referred back to GP. I'm on Warfarin for life, Bisoprolol, Ramipril and Doxazosin. Dosage has changed very little over the years and I have regular INR tests and 6 monthly bloods to check levels of everything else. Basically you learn to live with it, it's disconcerting when it starts, is it going to stop soon or carry on,? Do I need an Ambulance? Only advice to offer is the general one that most posts here reccommend. Stop smoking, reduce alcohol intake, eat healthily, reduce stress, regular exercise to what ever level you can manage, and see if anything triggers an episode. I love Chinese food but have to be careful of MSG intake, also too much ginger can cause problems but that's me. There is also an AF forum on here you may find helpful.

[Mgal]

I’ve lived with PAF for 10 years with only the occasional episode. They were more frequent at first but now I can go months without an attack. I take flecainide, warfarin and diltiazem and see a cardiologist annually. My advice would be not to think about it. It’s uncomfortable when it happens but so long as my INR is ok I don’t worry. I have almost given up alcohol and caffeine but no one really knows what triggers the episodes.