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Atrial Fibrillation Support

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What should I do.

didunth profile image
10 Replies

I was diagnosed with atrial fibrillation last year after a cycling holiday in September 2014when I was exhausted and out of breath and being dropped on the hills. I was given Xarelto, bisoprolol and and amiodarone. I felt much worse on these - not sleeping well at night, tired and even more out of breath and the bisoprolol was reduced to 1.25 rather than 2.5. I had a cardioversion in December which lasted June 2015 when I saw the cardiologue again. At this point I was taking diltiazem and flecainide. She told me that I was back in arrhythmia, to stop the flecainide and take the diltiazem twice a day. I saw her again two weeks ago. I feel few if any symptoms normally but when I cycle, and no doubt for other strenuous activities ly heart monitor can show a rate of 170 or 180 bpm. It does not feel that excessive but I feel that I ought to be able to go quicker, that there is a stop on my legs.

The cardio and the generalist think that there is no real problem and that I out to accept this as a sign of age. I am 69, female, have been a cyclist for years, used to climb in the Alps and ski. I have been told that atrial fibrillation is very common among endurance athletes. On the one hand my symptoms are fairly minimal, on the other I don't want to accept it without exploring other possibilities. I have been following this site for some time as a lurker. I have always been a very mediocre patient the very few times previously when I have been ill, I dislike taking medicines, would I be advised to see an EP to think about an ablation. What do you recommend?

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didunth
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10 Replies
PeterWh profile image
PeterWh

Definitely book to see a GP. They may not say yes to an ablation but at least you will have seen an AF specialist. They may change your medicines and may offer suggestions.

If you can afford it go and see the EP privately for the first time. Cost likely to be in teh order of £150 to £250 but check. Sometimes you may need further tests which could be done privately or NHS. Again check.

As you probably already know there is a list of EPs on the main AFA website.

If there is an EP at the hospital or CCG where you have been going to see the cardiologist then there are advantages of going there because they can look up your notes and records and tests. However you may want to get referred somewhere else.

Whichever way you will need GP referral.

didunth profile image
didunth in reply to PeterWh

I live in France and the situation is rather different. There isn't an EP department in Quimper where I live.

If you have been lurking didunth then you have probably already read some of the posts that have explored this very subject. If not then do a quick search and I think that you will find posts that might be of interest.

My history with AF seems to be very similar to yours and, like you, I avoid taking drugs if at all possible. Is that why I'm not as good a cyclist as Lance Amstrong perhaps?! I use spinning classes and a turbo-trainer in order to bring my fitness back towards pre AF levels and teach myself about the onset of AF and how I can push to a level just below that which will trip me into AF. I find Spinning and the turbo are much more controllable for this purpose than going out on the bike and am now fairly certain that, for me, it is the rate of change in exertion level which triggers AF rather than the level itself.

Since being hit with AF I have continued with cycling, mountain walking and cross-country skiing. My training regime has improved all of these activities very markedly since my early, can't walk up a mole hill, days with AF. I somehow doubt that I will ever get fully back to pre-AF levels (sadly age does play it's part) but I have yet to fully rule out cycling up the Ventoux!

I am 63, rapidly heading towards 64, and at the present time am not considering either drugs or an ablation. Personally I don't like the risks involved with either and non-intervention combined with training and certain alternative herbal and mineral suppliments which I take seem to be working for me.

weezergeezer profile image
weezergeezer

Its a fact that Af is common among athletes of all kinds, I personally recommend having an abalation as Af can get a lot worse

a factor to bear in mind is your age,

you maybe fit and active at present but if things change due to unforseen circumstances they may decide your not fit enough to have the abalation, and youll find yourself in a catch 22 situation !

Especially with the NHS under constant pressure, they will probably only offer the op to people who are experiencing Af a few times a week or more

Af can be a progressive condition unfortunatley so keep an eye on it and get pro active if it gets worse and push for an abalation, especially if you have private medical cover !

MarkS profile image
MarkS

As you live in France, I would recommend that you consider the Bordeaux centre where Prof. Haissaguerre and Dr Pierre Jais are amongst the very top of European EPs.

JonathanPittsCrick profile image
JonathanPittsCrick in reply to MarkS

There is also a specialised electrophysiology unit at CHU Rennes which is much closer to you.

Kodaska profile image
Kodaska

I'm 66 with 25 years of road cycling under my belt, or rather butt. I had my first ablation in 2014 to correct atrial flutter, and the second one in May 2015 to correct - and cure - a-fib. Don't be afraid of that approach. My heart is now clock steady despite the occasional odd beat (most likely ectopic) and I take no AF-related drugs.

When your having an arrhythmia, your performance degrades because your circulation is impaired. The atrium flails about but doesn't deliver the usual amount of blood to the ventricle. So your body doesn't get what it's asking for.

As the buzzard says, best to avoid drugs if possible.

While you're researching options and interviewing EPs, you might want to keep track of your experience. I suggest a daily log of all the relevant variables, things like strength and duration of arrhythmias, time of day, how you feel, what you were doing, and any side effects of meds. The more you know about it, the less fear you're likely to have.

Best of luck!

Mike11 profile image
Mike11

I know that "stop on my legs" feeling well. I walk huge distances and once just couldn't go on and had to call for help. My ablation cured this problem totally. Go and see and EP and get it done.

didunth profile image
didunth

Thanks everyone. I am still uncertain as to what to do, but I am happier about the situation. I think that at the moment there is no great urgency, and as I said at the beginning other than tiredness and being out of breath I have not had any real symptoms. I don't think I have noticed any arrhythmias as such, or only marginally when I have been lying in bed when I can feel my heartbeat which seems normal but perhaps not like a metronome. When I was cardioverted I was in sinus rhythm for about six months, and I cannot say that I really noticed the difference. My heart rate seems to shoot up when I exercise, but it does descend, perhaps I should ditch the heart monitor. I have told my generaliste (GP) that perhaps I ought to go further, he is not convinced but has written to the cardio. At the moment the weather in Brittany is revolting - high winds and sheeting rain. Perhaps tomorrow will be a day for the turbo-trainer.

didunth profile image
didunth

More news. I went back to my generaliste and cardiologue. They both thought that I didn't have that much in the way of symptoms, but the cardio did a stress test and put a holter on me for 24 hours. this showed that I was still in fibrillation., and the rhythm was irregular, the maximum heart rate goes to 170 -180 with effort. I had another echocardiogram which didn't show any other problem. I was sent to the cardio dept at Brest where I saw Prof Mansourati today. He agreed that the irregularity was not dangerous, but I needed to carry on taking an anticoagulant (I take Xarelto). If I had an ablation it would have a 60% chance of succeeding, on the other hand there would be a 5% chance of problems (stroke, bleeding round the heart or bruising). So what do I do now. He doesn't think it will deteriorate if I do nothing, but on the other hand while I don't feel ill I do think that I am weaker than I ought to feel. I take diltiazem but I am not sure it does anything to reduce the heart-rate, I have taken bisoprolol and felt like a zombie. If I do decide to go with it the waiting list is about a month. Again what should I do.

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