Right at the beginning?

I am a 63 yr old busy lady, I sing in 2 choirs, run a fundraising group for the NSPCC and look after a large house and garden as well as having 3 elderly relatives who all need help and attention at times.

Last August I had a raised heartbeat of 150+ in the middle of the night, called 111 and they advised a trip to A& E. 3 hours later just as they were about to shock my heart- reverted to sinus rhythm. Bit scary. Only ever had the odd "lumpy bumpy " heart before which when investigated about 2 years ago, found no abnormalities.

Saw the arrhythmia nurse at local hospital and he said it was atrial fibrillation and it would get worse ! Said I would probably need anticoagulant at 65 and if I had another attack I should take bisoprol. I am not very good with "pills" so thought I would wait and see what happened.

Had another episode HB around 120 - for 5 hours late October, after a stressful few days organising a fashion show , meetings with several cups of coffee, and a wine tasting evening which culminated in a large brandy ( I know! Self inflicted!)

I decided my triggers were stress, alcohol and coffee, so in the last month I have tried to drink decaffs, limited my alcohol consumption and tried to be more measured about my activities and stress levels. SO I was really surprised when last night, after a lovely carol concert with my choir, half a glass of wine and few nibbles at the after party , my heart went wild again. 150 + on the Alive cor ( which I had purchased after reading your forum).

Another trip to the hospital and again after an hour and a half, hopped on the trolley to go and be extensively monitored and it popped back to SR. gradually coming down to about 80 beats. They let me out with no treatment.

I have read so much of other people's ( much worse) experiences and found out lots of information, but I am unsure as how to proceed. I have read of "pill in the pocket" which I feel would suit me at this stage. However the locum GP I saw after the October incident, said he didn't like the idea of that and to go away and give it some thought.

My normal heart beat is only 60 ish resting and I feel very well most of the time. How should I proceed with this problem? I don't really want to take drugs all the time and if a drug slows my heart - then won't it be TOO slow? bit confused really. Help!

13 Replies

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  • Oh forgot to say I had an echocardiogram 2 weeks ago which was perfect .

  • If I were you I would pay circa £200 to see an Electrophysiologist for advice. Bear in mind that your AF is likely to get worse. As you are already on bisoprolol he may well think it appropriate to prescribe flecainide as a pip. He can also advise re an anticoagulant.

    If you aren't In a hurry then you can ask your GP for a referral. Bear in mind that a GP won't prescribe flecainide.

    Good luck.

  • My thoughts exactly plus read till you drop from AF Association website fact sheets as knowledge it power.

  • Not actually on any medication at the moment, but would have liked a pill to pop the other night when it was reaching 160 bpm - bit scary. :(

  • One of the problems with AF is that you have no control. That leads to a chronic loss off confidence - you just do not know how you are going to feel at any time. A pip restores your control because you are able to do something positive.

  • Welcome to the forum and also to the mad world of AF. You have probably realised by now that AF and medicines affect us in so many different ways and for each of us as individuals it can be very different from one day to the next.

    Yes definitely get a referral to an EP (NOT a general cardiologist) so that you can at least get a baseline established. Also get a full set of blood tests done that include liver, kidney and thyroid so that they are not only checked to be in range but again to establish a baseline. It may cost you a bit more than that for an echocardiogram if you go privately and if the EP wants that before transferring you to the nhs. Probably tellurium to suck eggs but keep a log not only with times and dates but also all key facts. Also keep a separate medicines log but only list when medicines change or ad hoc dates.

  • I meant to say the main AFA website not only has loads of info but also has list of EPs.

  • I will check it out thanks x

  • I've recently had an echocardiogram - it was fine. I will have a look at Eps in Staffordshire - any recommendations? Also had full bloods recently - doctor said they were boringly normal!

  • Just here to agree with what the others have said. Your GP should not be the final word for you. Find an EP and hear what the AF expert has to say. Meanwhile, you can listen to all of us experts ;-) Meanwhile, get good rest, manage your stress, eat healthy and exercise. Good luck!

  • Go see an EP / Heart Rhythm Specialist. They are the experts.

    I had a year of getting nowhere and going downhill, so I asked (i.e. insisted) on being referred to an EP of my choice, privately. Within a month and after various tries at different drugs I was fine and still am to date. Cost me £150-250 but worth it's weight in gold.

    Good luck hope you get it sorted soon.

    Koll :-)

  • All good replies. Agree with Peterwh need to keep a record yourself of all your checks and request copies of echo and ecg's - to which you are entitled I believe.

    Bear in mind this is a long journey and I would be much more 'belt & braces' as early as possible i.e. cut out alcohol, caffeine and decaff, reduce activity by 50%. You can always go back slowly to your old ways if the AF stops. Start daily brisk long walks to train the heart to beat steadily. Also start Yoga, Qigong or other such relaxing activity.

    My experience of an EP is not as good as the majority here. He had an impressive international CV but was running an hour late in private clinic and what I got for my £200 odd was " your the third today for PVI (Pulmonary Vein Isolation), 70% chance of success, may have to do more, the Flecainide is just a blanket covering it up and it will get out again".

    So I went back to my cardiologist and after 100mg/day Flecainide not working we tried 200mg/day which has worked fine for 20 months. The EP may still be right but in the meantime the procedures are getting better. Believe me I am so anti-drug of any sort but realised I am in the world of compromise and the important thing is to stay in control by researching a lot as Bob says and backing you gut feel.

    Hope something above helps and good luck!

  • Hi -

    I feel for you having such an active life and looking after yourself and then being hit by this. A lot of us are in the same boat.

    I'd just like to support the good advice of others (far more experienced in this than me). The NHS, assuming you are in the UK, will do tests which are very valuable, but it is also my experience that you will then be sent to a general cardiologist who is not as good as a specialist electrophysiologist (EP). I would recommend asking to see one of these, and if the system is unresponsive, it's worth paying - if you can afford it - to see one privately. Based on his/her advice, the rest of the treatment can still be done within the NHS.

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