AF - advice and experience needed

I think you might find that it's the beta-blocker that's keeping your HR down to 90. I'm on two meds: Flecainide is a rhythm control drug to prevent the AF, and Diltiazem is a rate control drug to keep my HR to a safe level if the Flecainide doesn't work. Some doctors use beta-blockers for rate control, but they hinder your ability to exercise more than Diltiazem. Without any meds my HR is about 200-240, with Diltiazem it will tick over at about 120, and rise to 160-180 when I stand up. It doesn't generally make me feel unwell, but I can get close to passing out if I stand up.

The stroke danger with AF arises from the fact that when you are in AF the blood is not pumped round properly and some pools in the bottom of the chambers. Pooled blood is more likely to clot, so when the AF stops there is a danger that you send a clot off round the system. That is why people with AF are on warfarin or some other anti-coagulant.

You all seem to have far more extreme symptoms from AF than I do! I am on warfarin and a beta-blocker already, and my heart rate when I'm in AF is rarely above 90 - generally it's impossible to know I'm in it without taking my pulse . It will be interesting to talk to my GP on Friday and see what advice he has - I certainly feel well-informed now!

I hadn't heard that expression about AF begetting AF but it was becoming true in my case, each episode getting worse and more debilitating. In my case I was nauseous, often vomiting, weak and very tired during an episode where my heart rate varied from 50 to 150 beats per minute. Felt like an alien about to explode from my chest!

I was warned that prolonged AF can lead to a stroke. So really some form of prevention is probably essential Badenkate

I don't think it's a particularly good idea to leave it untreated, there's a well-worn saying that "AF begets AF". Each episode causes more damage that makes another episode more likely and longer duration. AF degenerates anyway, but the sooner you treat it the slower the process. Some researchers are proposing that the prognosis may be better if it's treated by ablation at an early stage rather than meds first, but I don't think there's any consensus on that as yet.

I am not sure that it is very good for you to be in AF for prolonged periods if there is some way of avoiding it. If I understand rightly then AF breeds AF and the fewer attacks you can engineer the better.

Crun is right that flecainide is contra-indicated if you have ischaemic heart disease and angina. Presumably you have had an echocardiogram to exclude this.

Flecainide does seem to be the current drug of choice for prevention and I know several people who are on it very successfully - it has certainly been a godsend for us, as I no longer have to race off to A&E with him in the middle of the night!

To be honest if I were you I would ask for a referral to a cardiologist for a thorough assessment of the problem.

My OH went to the London AF Centre (http://londonafcentre.co.uk/) which specialises on AF only. It is a private clinic but does see NHS patients at Barts (details on the website under the tab "Your Visit"). My OH went there and then was referred on to the local NHS cardiologist. He found the AF Centre very helpful indeed and (as a doctor himself) felt reassured by their level of expertise.

Until 6 months ago, I had 5-6 month gaps between each AF session, they only lasted 4-5 days and apart from feeling tired if I did anything energetic like walking up a steep hill, it didn't bother me - no racing heart, hospitalisation etc. So I just waited it out, told the doctor the next time I saw her, had an ECG when I was in AF, and that was it. I didn't feel any need for any other treatment. However, it is now happening more regularly - every 2-3 months - and this time it went on for almost 2 weeks, although it has reverted to normal again today. So I wanted to get information from gransnetters who have been closely involved in a similar situation. Which I have, thank you all very much.

I had several bouts of AF several years ago resulting in hospitalisation and intravenous medication. This worked well in stopping the arrhythmia after a few days. However, the episodes were getting more frequent and cardiologist put me on propafenone hydrochloride otherwise known as Arrythmol. Once the appropriate dosage was sorted out, I have had no more bouts of AF, just the occasional flutter lasting a minute or 2.
I'll be on it for the rest of my life.

BTW my AF is actually LAF (lone atrial fibrillation), meaning there is no apparent cause. This treatment may not be right for everyone. Agree that cardio version is more reactive than preventative. Wonder why you are not getting medication Badenkate ?

Not everyone gets on with Flecainide, but there are plenty of other options, just steer clear of Amiodarone!

Think that should be headedness.

Am a great fan of flecainide as well. I had years on other drugs before being given this one. At first it didn't seem to work and my cardiologist admitted he had only prescribed a"child's dosage". He doubled it and I haven't had an episode for two years- just some light headiness occasionally.

Well, I had to look ischaemic up crun! No, don't have any other heart problems and am generally quite fit - although I could do with losing some weight ?. Thanks for the references, thankfully I'm with a new GP who discusses things with me, after changing from the old one who got very defensive if questioned!

Just a thought, are you ischaemic? Flecainide isn't safe if you are. It would probably be a better idea to ask your GP for a referral to an electrophysiologist if you're making decisions about your treatment, GPs are not the experts in arrhythmia. A couple of references may be of interest:

ESC Guidelines
Flecainide

Thanks crun and luckygirl. Up to now medication hasn't been mentioned. Cardioversion is clearly the first resort here in Shropshire and it has worked well for me up to now. I've had such wide-spaced AF episodes and I don't feel ill or even notice a problem except on exertion so that all I've needed to do is take it easy until it stops. It's certainly been useful to know about flecianide and read up about it so that it isn't something new if/ when we discuss it Friday

GOP? - I meant GP of course!

My OH has paroxysmal AF too and it is very well controlled with flecainide and has been for some years. It has been good for my OH and he only goes into AF very rarely and then he adds in another flecainide (he has permission to do this) and it stops quite quickly - usually within half an hour. We are so grateful for it as he gets quite ill when he goes into AF - vomiting and feeling very faint.

Has your GOP never suggested an antiarrhythmic drug like this? I know they are not suitable for some people, so maybe that has been ruled out for you.

I get both AF and AFl, but it's fast AF so I usually go and get it sorted when it starts. The other alternative you haven't mentioned is medication, if you can find an antiarrhythmic you get on with, that's the simplest option. The problem with a DCCV is that it's not actually preventing the AF, mine put me back to NSR at the time I had it, but I continued get ever more frequent episodes.

Flecainide worked ok for me for about a year, but it has a bit of a reputation for causing flutter in some patients and I ended up going on Amiodarone after it all went pear-shaped. That stuff's bad news, so I had an ablation for the flutter 10 months ago and then went back on the Flecainide to control the fib. Flutter ablations are really quick (20 mins)and simple, because they're done in the right atrium, and don't require piercing the septum.