AF Association

New attitude

Hi. New here but an AF old-timer... Started 2006 with infrequent episodes but progressed to almost daily. I now have it under a degree of control. Just wanted to say that I firmly believe that the treatment should not be worse than the illness! I think this is not true for many sufferers. I now have a whole new attitude to it.

Having read lots of posts people are struggling with the drug / procedure they have been recommended rather than with the AF itself. My AF is annoying but I am confident I'll be OK during an episode, and I realise that I worry more about the Flecainide I am on than the AF itself...

I can really recommend the Dr John M (drjohnm.org) website to help put this frustrating condition into perspective and help people get their heads around decisions they need to make about their treatment. Bear in mind that the average GP / MD doesn't understand this condition at all, and neither do some specialists.

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I agree with some of your points but many have had successfully procedures which mean no meds for many years- and a heart that returns to normal- so we must all make up our own minds about this- as I'm sure you agree`11

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Hi Rosy. I totally agree. I don't want to put anyone off any treatment (I'm on medication), but read a lot of posts from people really suffering as a result of a drug, etc. and just wanted to give them the confidence to choose what feels best for them, even if it's not what they are being prescribed.

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If you don't ask, you don't get and I think NHS doctors are obliged to prescribe the cheapest and see how things go. It can be well worth enquiring about alternatives. My pharmacist prompted me into mentioning cold feet to my GP and he halved my beta blocker and doubled my ace inhibitor (lisinopril). Goodbye chilblains. The annoying little cough I'd had for ages became more irritating and when I mentioned that, another doctor in the practice changed the lisinopril to losartan. Goodbye little cough.

These were small positive changes but swapping warfarin for rivaroxaban was, for me, like walking from a cold, dark tunnel into warm sunshine.

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I love the way you write! You should write a blog:)

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I am all too busy writing letters of complaint - in verse sometimes!

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Unfortunately nothing rhymes with rhythm!

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Unless you said...

There was a man from Lytham

Who's heart went out of rhythm

The doctor gave him a pill

But it made him feel I'll

So you know what you can do with 'em!

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I'll = ill (bloody predictive text)

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Haha. I bet they read like poetry!!

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That is a very powerful and meaningful reply Rellim....Carolx

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You might remember that I had a struggle with warfarin some years back, Carol. xx

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Thanks for that advice i agree with what you have said i shall have a discussion with my consultant about my medication when i see him i too worry more about my.mefs and side effects than the a f

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I'm with you, mostly. But everyone does need to tread their own path and we are all different.

I also start d with AFib around that time and don't take any drugs for AF other than anticoagulant but I have had several ablations, tried all the drugs - which I hated taking and usually felt worse on.

I have come to the same conclusion as you and decided that if drugs are not life enhancing, at the very least - then why would you want to take them?

What I do think is lacking is education on living well with AF.

I love Dr John, such a refreshing attitude and down right common sense approach.

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Thanks for that. I admire that attitude.

I used to get angry that my GP wouldn't refer me to a specialist for 7 years even though I had fairly regular AF episodes. In hindsight I now think he did me a favour, because I had time to learn to live with it and was protected from doctors' need to do something. By now I would probably have exhausted every option.

As it is I have a cardiologist who is also a minimalist, and who lets me choose my own treatment. After 11 years of AF I am still on the lowest dose flecainide with guidance on how much extra to take if I need it. We are holding off on ablation for now. He has performed many ablations but is healthily sceptical about them as a long term option. He's explained why ablation is an ongoing route rather than a one off cure and we've discussed success rates and various other issues.

No doubt ablation is possible for me at some point, but I read about too many people who are way down the line of big gun treatment very early in their AF life.

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Sorry but I have to say I agree with you and I don't on that about going down the line big gun treatment!! I got told by my cardiologist he wanted to see me in PAF more than the one time I had my first attack a year ago . My EP said not a chance As once was enough and the sooner they can ablate it the better the success rate . I am so glad I went in big guns as I wouldn't have known I had 2 other arrhythmia's going on . I think it depends on what type of AF you have as mine was a fast one that hit like a bolt of lightning. If like me your in your early 40s and can try and get a good outcome without medication then I would say go for it !! Some people have af and don't feel it and so that's ok with some but not with others . As the technology gets better the outcome on ablation procedure will to , I think it all deapends on what type of person you are as this condition recks your mind as well as quality of life . Sorry for jumping in , but I still believe in hope once caught in the early stages the outcome is bright . In my case I wish I had seen an EP years ago as I probably wouldn't have AF as my SVT probably would have been sorted out and cured . So me personally would tell people to have the EP study done as until that is done you really can not be sure what you have . I pray my procedure is successful, but if not I would not hesitate to do it again.

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I think we need to be a bit careful here. While I am all for minimising drugs, treatments etc, and would rather take supplements any time, I have come to the conclusion that it is not 'all about quality of life'. It is also about getting the AF 'under control'. Uncontrolled AF can affect the way our hearts behave long term, and I am under the impression that not 'controlling' it can lead to 'heart failure' (ie long term heart problems of a more serious nature). Once the AF is controlled ie minimised, then quality of life becomes paramount. Where the balance is between these two is something about which we each, with advice, have to make our own decisions.

Dr John Mandrola is good; so is Dr John Day - drjohnday.com

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I don't think we are in any disagreement. I take a rhythm control drug that I'd rather not for the very reasons you mention. I want to control the AF so that I prolong my life as long as possible. It is more about safety than quality of life for me.

And Sam, I wouldn't dream of saying whether you have been recommended the best course of action. You and your EP consultant know far better than anyone else what is best for you, and I'm sure things will get better for you as a result, and I wish you well.

It's dangerous for amateurs like me and others to recommend what anyone else does. I'm simply commenting that I hear of a lot of people who seem to be being treated fairly drastically given the symptoms they describe, and that that might be totally right but doctors vary and people should take an active and informed role in deciding what's next for them.

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[quote=Minimalist]Just wanted to say that I firmly believe that the treatment should not be worse than the illness! I think this is not true for many sufferers. I now have a whole new attitude to it.]

Hi Minimalist :-) I agree to some extent, however without the treatment the illness could progress to something far worse than has been experienced so far . We just don't know and it could be too risky to put it to the test.

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Hi doodle. I understand what you are saying and of course you are right. It's a tricky one. Basically, because no treatment is a known cure and no option is without its problems, I think really the whole thing is about how we best manage the risks that we all face.

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What I have struggled to find is an definitive research that confirms that rate or rhythm controls does offer protection against heart failure or progression. The most I can find is that it MAY offer protection and that from research funded by a drugs company which produces the drugs. My afib currently does not affect my QOL so my only reason for taking it would be if that protection outweigh any negative affects from the drugs. Would greatly appreciate if anybody could point me in the direction of any recent research that I could base my decision on.

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