STW AFib club

I was diagnosed with Atrial Fibrillation 2 years ago which has got worse recently. Whilst I’m waiting to be refered to a cardiologist I thought I’d ask if there is anyone else on here who has it and would like to share their experiences of it.
My AF experience:
I think I had been having episodes since my mid 20s (I’m now 35) but they were only short and coincided with hangovers or stress so I just ignorred them. Then in Autumn 2009 I felt weak and had a strange feeling in my chest when on on several rides (all 2hrs+), my HR monitor showed 200bpm during the lunch stop so I know something was wrong. The doctor immediate referred me to a cardiologist who did echo tests and a stress test as well as a 24hr ECG, my heart was found to be normal in structure and nothing was picked up on the test so the cardioligist diagnosed the likely cause as AF and that I should avoid caffiene and excessive alcohol but I wasn’t about to drop dead. He also precribed Flecinade to take when I had an episode. I left it at that – releaved I wasn’t seriously ill and besides after 2 visits I had already reached the limit of my Bupa cover).
Over the next 2 years I had a few episodes mainly on long road rides but left it didn’t bother me that much. However in the last few months I seam to get it during the majority of the longer or tougher rides (especially road rides for some reason), when it happens my HR races up (my Garmin only measures up to 250) and I get a fluttery fealing in my chest and lower throat. I can carry on riding but I it is a real struggle and I can’t push hard on anything, I just feel weak and low on energy. I dont have any trouble breathing though and my heart doesn’t beat harder than normal just irregular and fast.
I had a another 24hr ECG done last month which still didn’t show anything so I am waiting to see what happens next.
I’ve also just started to keep a diary to see if there are any patterns to it happening, especially when related to food as I also suffer from acid reflux.

Although there is lots of AF information out there very little of it is related to cycling or exercise so I’m hoping that we can share our experiences.

Sorry for the long post.
Thanks

Rob
ps. If you would rather contact me off-forum my email address is in my profile

So, to respond to Rob. We’ve been in contact about this offline.

I’ve just found out I have it. Again, no indication of an underlying cause.

I’m trying to make sense of it – typically googling this stuff after I’ve seen the cardiologist means I have more questions than I did when I was told to head off.

Apart from Rob, I know of one other on here – ton – who’s got it (and suffering, I know).

If anyone who has it, or knows about it, wants to share info, that would be great. Crikey gave some interesting advice on my saddle bad thread.

Cheers

Tom

No-one?

We’re in a small minority then, even for this niche-tastic place..!

Rob, i have been in permanent AF since october 2010.
the only exercise i have been able to do, is very slow, very low intesity cycling (canalside stuff).
i have been in for 2 goes at cardioversion, which both failed.
in october last year, i went in for a cardiac ablation, this went quite well, but i reverted back into AF after 10 days.
i go back in hospital on monday for some more ablation.

good luck, and i hope you get it sorted.

ton – hope you don’t mind me asking some Qs.

How quickly did you end up in permanent AF?
How soon did you start on drugs?
Is the impact on exercise from the AF or the drugs?

Hope it goes well on Monday – fingers crossed they zap it this time.

i went straight into permanent AF.
i did a stw ride round kirkby stephen, at the end of the ride i got some discomfort in my chest. this was not pain, just a odd feeling.
i went to the doctors the next day, who did a ecg.
he saw i was in AF and send me straight to the cardiac unit at LGI.

i was given a angiagram straight away and kept in for a week.
i was put straight on warfarin and betablockers, and i have been on them since.
the impact is from the AF, anything slightly physical leaves me breathless and cold sweating.

strange thing is, when i was ablated in october, i felt fantastic, i managed 3 normal rides with the wife and daughter in the 10 days after.

Cheers ton. Sounds grim.

Guess they never found a reason for the AF – mine’s typically without cause, but I only get it now and again (less often than Rob, I think).

Really hope you get it sorted this time and can get back on the bike.

I had AF (Paroxsysmal AF) from childhood (I think given what I know about the symptoms and looking back).

After my ex-wife noticed it one night, I eventually went to hospital and had an ECG, then had DC cardioversion to bring my 220 bpm heart back in line. Six months of flecanide later, and it was more or less under control, but I still had episodes when I was hungover or really, really tired.

I eventually got referred to Papworth Hospital for a EPS mapping, where I was told that the cause was probably due to extra electrical impulses coming down the pulmonary veins and hitting the left atrium. They could not do anything about it without a large risk of pulmonary hypertension. So, that plan shelved.

Push forward a few years, and the techniques have improved a lot, so have the successes. I was admitted to Papworth Hospital four years ago and had RF ablation, with my surgeon considering me “cured and discharged”. A year later I ran my first ever 10k race in 47 minutes, and also commissioned into the TA. I now run as often as I can, cycle when I can, do weights, kayak, and am looking forward to another mobilisation.

I can only suggest that you get your consultant to explore all possibilities for diagnosing you, including EPS mapping, and that if there is a chance that it is treatable (if it’s accessory pathway type, I was told that is a straightforward fix)it is treated. Yes, you have to put up with anti-coagulant, shaving your crotch and a hole in your right femoral vein, but if it fixes things, it is worth it.

If you want to talk about this off line, please let me know.

willard – fascinating. Thanks..!

No worries. I really think that this can be beaten, and I have my fingers crossed for you Ton. Please let me know how you get on.

Kevin was diagnosed with it just before Christmas, after not feeling well for a couple of months. Hes on beatablockers, blood pressure pills, asprin and cholesterol pills. He is going through the usual tests at the moment. He had a nuclear heart scan last week and has another on Friday. His isnt triggered by exercise. The worst ones wake him up in the night

Tracey, is Kev still able to ride?
i hope it has not curtailed his riding. when it stops you doing something you love so much, it is a proper sod.

The worst ones wake him up in the night

Google “vagal atrial fibrillation”. I’m sure I saw something about this happening more frequently at night.

One of the things for paroxysmal AF seems to e the incidence of trigger that bring it on. That said, all doctors say that “AF begets AF”, i.e. the more episodes you have the more you will have. I’m sure alcohol is a trigger for me – judging by last week, a couple of pints brought an episode on about 2 hours later.

when it stops you doing something you love so much, it is a proper sod.

I have a real fear of that.

Hes done a few light rides

I was told pretty much exactly that Rob, except that it was time rather than severity that was more damaging, almost that your heart got used to being in the wrong rhythm.

I used to dream about somehow waking up to find out that my heart had discovered on its own a far more efficient way of beating thanks to AF, but it sadly never happened.

Thanks for the replies everyone. I’ve been away for few days which included a works night out where I consumed more alcohol than in a long time, yesterday I had several short episodes during my hangover.
That’s great news Willard – thanks for sharing.
I’m going to push a harder for a referal as they don’t appear to be taking it seriously, maybe I should walk into A&E next time it happens (no doubt it will stop as I’m walking in).
Ton – I feel for you, I had seen that you weren’t well but didn’t realise it was AF. Good luck on Monday.