Atrial fibrillation 15 years ago - differences from today.

[Tobw]

Just around the turn of the Millennium, a work colleague used to get us to feel his pulse two or three times a year when he came in with what he called his "fibrillations". After spending a day in hospital when he first experienced them and being told they were nothing to be concerned about, he almost treated it as a joke - from memory his pulse was not too fast, but it was erratic and I'm pretty certain he was suffering from PAF.

He was taking medication for his blood pressure, but nothing at all for the fibrillation - he was a fairly heavy drinker and didn't cut down at all when his heart was playing up, he also never talked about "triggers" for his fibrillation.

I mention this because somebody (can't remember who sorry) was talking on here recently about how attitudes to AF have changed since 2007 - can someone who has had the condition for longer than I have confirm that it was common for it to be treated in such a cavalier fashion as my friend seems to have experienced?

I was diagnosed with PAF in 2008 and would be interested to know if the attitude I encountered and treatment I received would have been if it had come something like eighteen months earlier - with the new Nice guidelines due out tomorrow, I wonder if current treatments will be considered dated in two or three years time?

[BobD Volunteer]

Hi Tobw and yes interesting thing. It was probably me talking about 2007 when stroke and AF were linked. I was finally diagnosed in 2004 after ten years or so of missed opportunities by a previous GP (Idiot). When I moved house my new GP had a mother with AF so understood it and referred me for treatment. I was lucky but as I have said many times back then there was little info about AF . no AFA and not much chance of support. Things have got a lot better over the last fifteen years for sure mostly thanks to Arrhythmia Alliance and AFA. Had you been diagnosed say in 2006 it is extremely unlikely you would have been put on anti-coagulant. I was only asked to start warfarin for my ablation that year prior to which nobody mentioned it.

Will we look back in a few years with horror Well officially we don't yet know till tomorrow what the new guidelines say but I understand that a more joined up approach to AF treatment is planned so we hope not. Do please remember that this is all still very new science and we have come a very long way. I know that some grumps complain that not enough is being done BUT compared with a few years ago it is and progress is good. Trying to overcome the inertia of society and doctors in general is never easy but there are some dedicated people fighting our corner so lets hope and pray that they/we do succeed and that one day we will find both reasons and cures for the condition.

Bob

[Tobw in reply to BobD]

Hello Bob - I thought it was you who had mentioned 2007, but decided I'd best not mention anything just in case.

To be fair to my GP, he recommended I go on Warfarin right from day one - I chose to stay on Aspirin for a while, but it didn't take me long to realise that I had made a wrong decision once I did a bit of research..

I tend to look at things quite optimistically as well. In the six years since I was diagnosed, public awareness of the condition seems to have grown - I know I would say that because I've got the damn thing, but in the last year or two especially, I've seen a lot more about arrhythmia's in general and AF in particular in the mainstream media at times when I had no prior knowledge of it coming on.

[lizwright]

I was misdiagnosed for at least two years even tho I actually saw a cardiac specialist. I was telling them I ride and have several horses, what they saw was an overweight middle aged woman and presumed I was not fit. The symptoms were so glaringly obvious. Then I went into a year of appalling infections and I couldn't walk across a room or put my clothes on without it taking ages. I am still working, driving, going to meetings etc all through this. I am by this time thinking I am a failure and unfit. The GP was giving me linctus. We then had a new GP who did ecg, then phoned up same evening, told me to rest and go to hospital next day. I was there three weeks and everything they did could not bring heart rate down but at least we knew what it was. Two years then of general consultant for cardiac (I wonder if we should test your cholesterol again..... NO I DON'T HAVE CHOLESTEROL!) Finally referred to Papworth and the whole ablation thing began and now on cocktail of drugs for life but have rewarding and quite exhausting full time job as I can manage it quite well now. It is much better now. I went through hell.

[Tobw]

Thanks Liz. I can remember how I felt when I had my first episode. That was bad enough, but to have things go on for that long with so little positive support from the medical profession must have been terrible for you - at least it felt like I was being listened to when I first saw my doctor about it.

[Buffafly]

My first bad attack of AF was in 2001. I was put on warfarin in preparation for a cardioversion but my heart returned to NSR on its own and I was left to get on with it after that. In 2007 (I still have the yellow book) I had a long episode and finally went to see the out of hours doc at the hospital, she was very alarmed and said I should have come in sooner because of the risk of stroke. Back to warfarin, lots of tests, prescribed Propafenone, no warfarin and signed off. A few years ago my doctor gave me little talk about taking aspirin which I tried with very nasty side effects. Now aged 69 I have been prescribed Riveroxaban at last. In all the time up to now I have not had any monitoring or review of my prescription.

Thank goodness the new guidelines have been published but no help to all those people who have had major strokes caused by AF while health officials were concentrating on heart disease.

[Tobw in reply to Buffafly]

That last sentence of yours says it all Buffafly. In a few years time, there will probably be some sort of estimate as to how many lives the new guidelines have saved, but, in essence, the means to have got that improvement years earlier was always there - it's hardly as if there's some groundbreaking new treatment involved is it.

[emb398]

When I went to my GP two years ago, it was as a result of a side effect, massive urination, all night, about 700ml every 40 minutes. I also "mentioned" that my chest seemed to "Thump" as this occurred. I was told that the urination was because I had drunk more the previous evening, and the thumping was just an occasional extra beat - nothing to worry about! It was only when I developed Sleep Apnoea that AF was considered. I was then advised to just rest until the symptoms subsided. I was eventually referred to a consultant, more to shut me up than anything, and he told me about AF and it's problems, medicated me, to stop the thumping (my heart rate is in the 160's when Fibrillating!) . I can't take a "pill in the pocket" as, when an attack of AF occurs, not only am I urinating madly, but my stomach rejects food and drink - even a pill. I also take an asprin, so I'm wondering if I should change to something better. After the diagnosis, I never saw a cardiologist again, and as my GP is on a sabbatical, I don't even see the same GP twice in a row! I have had no further help, or advice. So much for continuing care....!

[bebe7637 in reply to emb398]

Are you taking anticoagulants ? I now take Rivaroxaban , which is fairly new and doesn't involve constant check ups. It is more expensive than Warfarin and isn't always being recommended due to the cost. Well worth asking about. Good luck.

[emb398]

I'm taking an asprin daily, but I worry. I have severe Osteoarthritis, and sometimes bleed within my knee joints, so warfarin was discounted. However, I live alone, and am terrified about the result of a stroke. If I could be sure I wouldn't survive a stroke, I would worry less, it's the fear of serious impairment!!!

[Buffafly in reply to emb398]

I used to bleed and bruise a lot on warfarin and much worse on aspirin yet I don't seem to have a problem with Riveroxaban so it might be worth a try?

[emb398]

I.m having surgery in a couple of months, so that will be an opportunity to ask. I can't see one of the locum doctors (my GP is on a sabbatical) changing the prescription!