AF Association
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Stupid, perhaps, but it's complicated

I know this will attract a lot of criticism, but today, having returned to NSR yesterday, I did the Great North Run (half marathon).

I was doing it with a friend who is struggling with weight and health problems so I knew it was going to be an exceedingly slow pace. And together we would provide moral support. We were both once fast runners, and knew it would be emotionally difficult to become joggers and walkers.

I felt brilliant the first 7 miles. Kept my HR around 100bpm. Around 8 miles, I felt things start to change, and soon enough, I was feeling dreadful - dizzy, sick, unwell, moments of paranoia and dread. I really have no idea whether I had an anxiety attack or my vagus nerve decided to throw a wobbler, or perhaps something else. It's the one part of this illness that baffles me to this day.

We walked most of the rest of it. Around 11 miles, I went back into AF. I didn't notice any further symptoms, but I can see my HR went up to 160 for a very low level of exertion.

Of course, I know that it was silly to do a half marathon whilst I am on the road to getting fixed. But I am battling with my mental health over this illness, and if i lock myself up at home, I expect that depression is only a matter of days away. It's a tough call.

I am not planning on doing any more such events till I'm fixed. I will chill out from now.

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Hello Mejulie :-) it sounds as though you were trying to prove something to yourself , if I were you I would pay attention to what your body is telling you.

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Maybe trying to prove that I am not a prisoner to AF, but to be honest, I think I feel worse now than i did before :(

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...MJ :-) no reason to feel a prisoner of AF :-) I actually feel better than I have in years which may be down to a change in lifestyle .

I do listen to my body though something I failed to do before AF and I now realise that a bit of moderation in life is better than no life at all.

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You do not have to be a prisoner to AF. Just be sensible! Would you try this sort of thing with a broken leg? No and AF is just as much a broken heart as a broken leg. Learn what you can do within the limits of what your body tells you.

I do know a chap who was a triathlete with AF but he was sufficiently switched on to his body not to over do things when there was a risk of AF.

You don't have to stay at home. You could have marshalled on the event and been involved out in the fresh air and rain. lol

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Good on you! I more than likely seen you as we watched most of it from where live.

Probably a bit excessive but I can understand why you wanted to do it!

I decided again today that I will try to do it next year even just to walk it as I will never be able to

run it.

Main thing is take it easy now and drink plenty of water and don't be too hard on yourself

you have done a great thing! well done! Don't let AF take over your life.

Wendi

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Wendi. Since I started doing the GNR quite a few years ago, it has been my favourite weekend of the whole year. The very best of humanity on show. You must do it, even if you walk. The people you will meet will amaze you.

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We can all only do what we feel is right for us. X

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❤️

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The thing is - you tried. OK, it didn't work completely and your body gave you hell for it but it's not a bad upper limit to be able to run 7 miles with AF lurking.

I think it becomes a matter of where our individual limits are set to push a little bit but not too much. I found that difficult and variable, depending on goodness knows what - in my case age is probably a factor as well as AF and its drugs.

Rest up and recover - don't be too disheartened as living with AF is as much about mental attitude as anything.

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Love this. Thank you.

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When I was first diagnosed in 2012 I took that as my cue to knock the training on the head and take it easy. At first I felt great: no fatigue from all the training, but I still had my fitness. The problem is that I never managed to get back to a point where I was able to resume training, so bit by bit I slowly lost all my fitness. Now I'm too unfit to do anything much, unable regain my fitness, and just sinking further and further into depression. I'm beginning to regret that I quit the training five years ago, but at the time it seemed like the right thing to do.

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If you would keep in mind that the very next level of arrhythmias, starting from AF, is SCA (sudden cardiac arrest), you would not gamble with it...

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Thanks all, I don't feel so bad / stupid now for reading some of your comments, but also appreciate the more sinister ones too. Currently feeling absolutely fine again, and strangely, my heart isn't in AF, just got a shed load of ectopics (probably a sign of approaching AF). Perhaps I wasn't in AF on the run after all (or came out of it soon afterwards).

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Sorry it turned out like that but you tried, probably a bit mad but with a good motive. 'Better to have run and lost than never to have run at all' 😀

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Yeah, well you said it about criticism - I'd say bloody madness !

Look, you just have to accept that you have a heart arrythmia, just accept that all the things you used to do you ain't gonna do anymore. BUT, that said, you don't have to be a prisoner to AF - UNLESS YOU WANT TO OF COURSE.

Step back, accept that - despite all the craziness on this planet - it is still a beautiful world. Take it in both hands, grab it, go with the flow and pursue healthy, athletic lifestyles or whatever floats yer boat - so whats wrong with jogging and walking. Why not try bloody mountain climbing, abseiling, swimming or whatever ... if you want challenges. I mean the worst that'll happen is you'll fall and die or swim and drown - both of which makes AF quite attractive.

I turn 73 in a few days, I still put in 30 hours a week sometimes 40 hours, driving a tourist bus which means handling shedloads of passengers heavy baggage & not much under 15 kgs per suitcase either. In Nov 2015 I had a partial knee replacement of the right knee and within 8 weeks of that I was out walking, climbing the rugged and at times cruel South West Coastal

Path near where I live in Cornwall. At the 11 week mark I was back bus driving again. BUT, I have learned to listen to my body, to pace myself, to watch my diet and my body and I now have quite a good working relationship with hopefully a good number of active years still ahead of us.

And you know what, I had more fear of the knee surgery going wrong and not being able to walk again than I had/have of my heart chucking a wobbly. The only thing about your story that surprises me is that, with all your athletic activity, you aren't complaining of a hip, knee or ankle joint needing replacing because they are worn out or riddled with oesteoarthritis.

I am wondering what state Mo Farrah will be in when he is 73 !

Anyway, apologies for sounding so mercenary, I just say it as I see it ..... may the force be with you.

John

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I was always told by various cardios just to carry on with my life so far as excercise was concerned when not in AF. It comes an goes regardless. If you then go into AF you then proceed with care. It sounds as though that's just what you did.

Peter

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Thanks Peter, it's reassuring to hear that from a separate source. My cardiologist said the same to me.

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I have come from the other end of the scale - I never seriously exercised prior to AF. Now, I love a good 12km stroll - it takes me 3 hours, so no great exertion but also not a prisoner.

There are perfectly enjoyable points on the exercise spectrum between housebound and marathon :-)

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Hi Mejulie69.

Having run the GNR a few times and other half marathons I completely understand. I always run with some friends for a weekend somewhere. This year we are in Palma for the Half Marathon. This year I was diagnosed with permanent AF. My Cardioversion lasted a few weeks I am due to see an Elctrophysiologist, but am fully intending to do something in Palma even if I walk the 10k. Otherwise I would not enjoy a weekend with my friends letting AF win. I watched the GNR this weekend wondering if I will get there again. If I sort this thing out I will be there. So I understand and have similar thoughts. You will have learnt something from the experience it's part of understanding your limitations and working out the balance. Well done!

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Love your last point. Yesterday was emotionally very tough for me, but I have learned a great deal from it, even though I have yet to find the final answer. Keep up the good work!

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I go running with paf though have not gone more than your 7 miles since I developed af. I do go cycling though 54 miles in last weekend in 3.5,hours ish .if you want to run - run , if your heart rate goes too high slow down. I have no Idea of you age fitness or your normal pre-af hr but when I go in to af I can be at 170 sat still . I never panicked about it as I often see ,170 peak when running. I am ,57 years old.Everyone is different. The max I have seen when running was 243. Yes I did stop running! However I did not drop dead either as apart from the af my heart is in good condition. This was confirmed two months ago in hospital by ultrasound scan following a week of af . The highest hr on that spell was over 220. The point is don't get depressed about it. Do what you can stop if it gets stupid. Depression is probably worse than AF. An old friend of mine used to say 'life is not a rehearsal, this is it! You may as well enjoy it "

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A little gem of a post! So far, my AF is very slow… 40-70bpm when sat still. It only takes off when I run upstairs (around 160bpm), but tends to settle down fairly quickly. 8 weeks ago before I even knew what AF was, I cycled up Hardknott in the Lake District – 30% gradient, probably the toughest piece of tarmac on the planet, and I too didn’t die (earlier in the day, my HR went up to 209bpm and I had absolutely no idea why it was happening – I thought it was a hardware malfunction!). The “bad” symptoms only began after diagnosis, which is why I am tending to believe that it is anxiety rather than the AF itself.

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I also assumed my heart rate monitor was faulty at first.

The erratic readings first started just after they'd done a Bruce test in summer 2009 and pronounced me fit. Buoyed up with confidence after that I started training harder, and by summer 2010 my HRM was so erratic I stopped using it altogether. Over the winter of 10/11 I was training again but without the HRM to pace myself this time, so by spring 2011 everything had gone pear-shaped, and it's been downhill ever since. I had another Bruce test in April 2012 which was also clear, but it made things go from bad to worse, and by August 2012 I was in an ambulance on my way to A&E. My first big episode of AF had been back in 2010, but at that time I had no idea what it was.

If you're interested, this is the advice and eligibility criteria for participating in sport with arrhythmia:

Heidbüchel et al:

Recommendations for participation in leisure-time physical activity and competitive sports in patients with arrhythmias and potentially arrhythmogenic conditions Part I:

Supraventricular arrhythmias and pacemakers.

cpr.sagepub.com/content/13/...

Zipes et al:

Task Force 7: Arrhythmias

36th Bethesda Conference

Eligibility Recommendations for Competitive Athletes With Cardiovascular Abnormalities

JACC Vol. 45, No. 8, 2005 April 19, 2005:1354–63

content.onlinejacc.org/arti...

Here 41% of athletes had to give up sport within 9 years of diagnosis with AF:

Hoogsteen et al:

Paroxysmal atrial fibrillation in male endurance athletes. A 9 year follow up.

Europace (2004) 6 222-228

academic.oup.com/europace/a...

In 2006 Heidbuchel wrote “It seems prudent to counsel [AF patients] on the possible pro-fibrillatory effects of extensive endurance sports activity. Reducing sports activities may need to be considered…”

Heidbuchel et al:

Endurance sports is a risk factor for atrial fibrillation after ablation for atrial flutter.

Int J Cardiol. 2006 Feb 8;107(1):67-72

advice that's now incorporated into the current ESC guidelines:

Kirchhof et al:

ESC Guidelines for the management of atrial fibrillation developed in collaboration with EACTS

European Heart Journal Advance Access published August 27, 2016

eurheartj.oxfordjournals.or...

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Mind blowing stuff, and I've only just scanned some of it. How can one little organ be so complicated??? Will read it more thoroughly tonight!

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Sorry for late reply on this, as I missed a point in your reply, my bad symptoms also only started after diagnosis, I am certainly not anxious ( well no more than my normal anyway) so my assumption is it is that the change is owing to the medication, which is why I try to reduce it, but every time I have an issue , the hospital increase the dose or add more meds!

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Hey Mejulie69, I was there supporting my son and his girl and her mum who all managed 2 hours 48! Congratulations to you, and yes, if I were a runner I would have gone ahead and tried to do it too. As others say, don't let AF rule your life.

The crowds were mad and the metro choked but everyone had a great time. How are you today?

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Hi Momist, I am absolutely fine today, thanks. My heart is in perfect rhythm. Emotionally I am a little drained as I still don’t know what happened to me. Yesterday it took me 2 hour 57 minutes… last year I did it in 1 hour 37. Quite a difference! And yes, the Metro queue was something else!

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That's still a good time, well done you! Don't let this AF get you down. Life is not a rehearsal. Go for it.

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Very hard not to work out. Had ablation done August 1st and was told to just walk until bruising from catheter went away. Just could not sit still. Pushed it to hard walking, and light slow jogging and went into some strange etopic beats. Went back to nsr on its own, so of course I headed back to gym. Did machines for 2 weeks and today lifted free weights and pushed a little. No problems so far. I know heart has went thru some trauma but research shows doing something better then doing nothing. Just pay attention to your body. You know your limits. Be positive, be active, don't let this get you down. Think like a winner

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We all different. And so are our AFs (their symptoms and causes). So I don't think there's a right thing for you to be doing outside of what's right for you - and the only ones who can judge that are you, and those who know your circumstances well enough to offer an opinion you trust (for example your loved ones and your EP).

However, I can share my own experience by way of illustration ...

I've had AF since last Sept, although I didn't know it until May. Since last Sept, I have run two half marathons (one was the fastest I have run in 5 years, and just a couple of mins slower than my PB) as well as many 5k parkrun (including my parkrun PB), and a 24h 5 mile relay (25 miles in total). The latter with the support of my EP. I didn't experience AF during any of them, although I occasionally have done before training runs or parkrun which slowed me down massively.

As far as I could tell exercise was not a trigger for my AF, which seemed to be triggered vagally (digestive system at a guess), or just randomly. So, with no particular expectation that my running would make it worse, and for the sheer pleasure I get from doing it, I decided to continue enjoying my sport as best I could, when I could. I listened to my consultant and my wife and then i made my own decision. Perhaps I was foolish or lucky, there's no way I can know, nor am I particularly bothered to know. It is what it is. I try not to look backwards unless doing so will inform the future.

Steve

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Fantastic to hear that Steve. Gives me hope indeed. I'm still very confused and perturbed about what happened to me after 7 miles though. I just felt so so ill, yet my heart was in rhythm till much later. I'm not even 100% sure I went into AF later, just my HR graph that suggests I did. I am certainly not in AF now. Have a strong feeling that it was anxiety / nerve based but can't be sure. I have been struggling with anxiety attacks during the last month. What's your situation with regards ablation? Done it / going to do it / not going to do it?

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I did it. 2 weeks ago. Too soon to say how it went, I think, other than so far it's been pretty much textbook: some ectopics occasionally, a tiny amount of AF, raised resting HR, variable blood pressure, a few headaches, no exercise yet (I don't feel ready) but I'm mobile, walking fine, sleeping well, not in any pain, and finding time to do a few things that running doesn't normally leave me time to do.

The thing I found about AF is that when my HRM says I'm in AF, I always am (HR much higher than it should be - and as a runner who's used to wearing a HRM, I know what it should be). However, when my HRM says I'm not, I may be - probably because HRMs are designed to look for the QRS complex (ventricle beat) and are easily confused by the extra P waves generated by a fribrillating atrium.

If you're not used to exercising while in AF, it could be simply that you're reacting to what that's doing to your body - which is not designed to be in AF, let alone while exercising. If you want to exercise while in AF, you probably need to start gently and accept that your performance will be materially lower. AF can severely reduce the amount of blood your heart pumps and in turn the amount of oxygen delivered to your muscles and organs. Your body needs to learn how to deal with that in the same way that any new runner does. You've probably seen what pushing too hard does to some new runners - when you're in AF, that's probably you.

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