I know that many of you will think I am stupid. If so, please keep your thoughts to yourself. I am not trying to prove anything or stupidly trying to defy my AF. However, since starting taking Flecainide in the Summer I have gradually started running again. I was scared out of my wits for the first few weeks worrying that I would drop dead at any moment. I still worry. Believe me. However I need to exercise and I need to live a normal life. I am not naturally athletic and running does not come easy to me however I thrive on the feeling of achievement that it gives me and boy do I sleep well after a long run and all my worries disappear. I ran my first marathon last year (London) and shortly after my AF became a reality. This may be the last time I run a marathon. Who knows, but I am not prepared at my age (42) to lay down and give up. I know that I will require an Ablation at some point in my life (my EP tells me) but until then, I want to live a normal life (as long as my body agrees - I am not stupid and will not risk my health for anything). So, what else can I say other than here is a link to my fundraising page - I am running for a charity called Phab Kids (allowing disabled children and those with difficulties to mix and have fun with able-bodied people who seemigly don't have any visbible issies) to participate in outdoor activities. On my page are links to the webiste and videos showing the kind of work that the charity does. Please have a look and if you are feeling kind, please donate, but please have a look anyway. Best wishes to all of you that suffer from AF, my thoughts are with you all, but remember that there are worse things in life...
Well done for staying positive and getting on with your life. If your medics think you can safely do your running then good on yer for doing so. Remember to keep well hydrated which you will know anyway as a runner and vital as an af patient.
Thank you. I intend to see my GP beforehand and get my BP checked etc. My EP didn't exactly encourage me, but then again didn't say I shouldn't which you can understand. They don't know themselves. Neither does anyone on this forum. None of us are God. Who knows what is around the corner for any of us, AF or not...Live life and be happy...
Having just finished radiotherapy having been diagnosed with breast cancer (all good now though, fingers crossed) in September last year, I've decided to do the race for life in April/May.....even with my AF so, I realise it's not quite the same as a marathon but you 're so right. I now have 2 reasons healthwise to try and keep my life on an even keel and can't allow either of them to 'rule' my life.
I will like you be careful in what I do and will enjoy the sense of achievement....hopefully!!!
Go for it and enjoy!!
By the way, I was the official photographer at the 2008 London Marathon for the Rainbow Trust charity.
and, my daughter ran the New York Marathon just in November!!!
Bless you, I hope all is going well with your treatment and best of luck with your challenge!!! Good for you. It's a small world with you being the photographer in 2008!! Shame you aren't there this year, I could have given you a wave!! Take care. Yan
Good morning all. I was diagnosed with PAF a number of years ago and I was getting symptom for as long as I can remember. I'm 36, ex forces and for the past 15 years worked in the emergency services. So I have always been active and looked after myself. Over the past five years I have increased my fitness, which in turn has strengthen the pathways within my heart, reduced my resting heart rate and has no doubt had a number of other positive effects on health.
I train 5 to 6 times a week, completed an ironman a couple of years ago and now time trial, picking up the odd trophy along the way.
I had to learn what my triggers were for PAF and avoid them. I don't drink too much if I'm training the morning after, I don't take caffeine prior to training and I generally reduced my training load when my stress levels are high.
I still get the occasional episode however now it lasts for minutes, not hours.
Apologises for poor spelling, I hate replying on my iPhone. If you want any further information, support or advice get in touch. Ed
Great to hear Middy! You sound as if you are one tough cookie!! Very positive and thank you for sharing. I'm very impressed that you completed an Iron Man! I have only dreampt about doing one...One step at a time eh! haha Do you take medication for your PAF?
I take flecainide morning and evenings (however I normally skip the evenings unless I'm doing something), then I take a extra dose if I have an episode.
Small steps to start off with. Learn your triggers, listen to your body and you won't go far wrong.
My consultant thinks it's good that I race and has said to double my dose (it's already a low dose) if I'm taking part In a stressful race 😁.
Everyone is different, however exercise has helped me. Happy to help if needed!!!
I ran the New York Marathon with AF with my EP's blessing. I worked out, via lots of training runs, that if I ran really really slowly for about 6 miles, the AF would not kick- in and while my time was not what I would have wanted and what I would have been capable of pre-AF, I had a great time. I've subsequently had an ablation (nearly 2 years ago now) and I've been AF free since. My EP has capped my running at 10 miles though because of the link between endurance sport and AF. While I look on slightly sadly as my running buddies train for their HM's and marathons, I'm really lucky to be able to run without worrying. I've run a couple of 10 mile races and because I'm able to do interval training now, which I couldn't do with AF, I'm slowly getting faster again. Good luck with London. Sue
Hi Sue. Thank you and thank you for sharing. It sounds as if you have been on a journey, literally. You seem to have found a sensible balance between health and exercise and tuned it to your own needs. I do feel for you with your pals running longer races etc. however with you getting faster now post-opp who knows what the future holds for you! Best wishes.
I totally agree with you . I have AF and trying to lead a normal life . I don't run I work as a nurse on a busy ward so for a 12 hour shift I am rushing around that's my exercise. Anyway best of luck on your run .
Sorry of course I can see when London marathon is so don't respond ! I run myself with af symptoms. Still seeing cardio and tests. Taking Apuxabsn reluctantly Ran a little last night and will d a 20 km in April. We simply have to live but with cars.
Hi i I have Vasculitus and mild atrial fibrillation which were diognosed after many years of running . I ran nine London Marathons including New York and Paris. Even now at the age of 78 I still go power walking and like you feel good that I can do it so good luck with the London Marathon hope all goes well
I ran the London Marathon last year. At the time I was on Bisoprolol, I started Flecanide thereafter. It was my second marathon and unlike my first I trained in a treadmill - not easy. All went well in training, however on the big day I got to 10 miles at my target pace then very quickly started to fatigue. I kept going and eventually completed in 4:25. I now think that I may have gone into AF around that 10 mile mark. In typical sods law fashion my heart rate monitor did not work that day so I could not really tell if I was in AF or not. it was a struggle but I still finished and never regretted continuing in the face of the fatigue. I did enter again for this year's race but was unsuccessful in the ballot. Subsequently I have spoken to my EP, who advised that doing another marathon is perhaps not a good idea due the emerging evidence regarding extreme endurance running and AF development in susceptible individuals. I have now changed my goals to stick running but to avoid marathons. It is possible that my running over the last 10 years or my marathon trading caused my AF - I will never really know - however I remain very positive and am glad just to be able to run at all.
I suppose what I am saying is, yes complete the marathon, enjoy it, and it will not kill you. However it must be recognised that it may not be contributing to your overall health in the way that most people would think. Have a look at Dr John Mandrola's web site. Dr Mandrola is an EP, Athelete, and fellow AF sufferer. It makes for good reading. I like his quip : "If only Pheidippides had lived..."
Best of luck with the training, enjoy the event as it is a fabulous experience, and stay well.
Thank you. I appreciate what you are saying and I know that what you have said about training and overall health has it's truths, although I always think that mental health is often ignored which is just as important for many people. I shall look up Dr Mandrola. Thank you. Sorry to hear about your marathon experience although I have to say, to many people that is a really decent time! Obviously though if you were aiming for a better time that you knew you were capable of, it must have been very dissapointing. Thanks for your reply and best wishes, yan
Carpe Diem. and if you ever get to the point (which I hope never happens) that you cant run marathons just think of all the great memories you will have made doing this one.
Hi and thank you. I totally understand where you are coming from but probably didn't explain myself very well. My EP told me that I will need an Ablation at some point in my life but is currently happy for me to take Flecanide which is for now at least stopping my AF. Obviously if and when it stops working and I have to start taking higher doses etc. then I will have to reconsider my options!
Ok Yan it's your decision of course and you are obviously aware that AF is progressive? It won't go away without ablation therapy. Episodes will gradually become more frequent and longer lasting and the effectiveness of medication such as flec will wane. As it progresses, the success rate of ablations begins to decrease, which is why 'sooner rather than later' is generally thought to be the best option.
Sorry if that all sounds a bit doom 'n gloom. But it doesn't have to be like that and as long as you've discussed it with your EP and he doesn't keep you waiting too long.........all will be good.
Best wishes for the run on 24th April...........and an AF free PB in 2017!
Yes I'm aware of the progessive nature/success etc.and maybe this time next year I will be thinking differently. Who knows. But for now at least I'm happy with my decision. Thank you for your responses ☺
I've been reading the posts about AFib getting worse with age and also there are comments about Flecanaide being dangerous. I'm presently taking 300 mgs of Fkecanaide daily. Please give me opinions about getting an ablation. I've been on Flecanaide for ten years and increasing dosage steadily. I am 65 years and am afraid it will become more dangerous to have the procedure the older I get. I really hate the anxiety that PAF has caused me and would like to know my triggers but don't so it leaves me very uneasy. Any advice for me going forward is appreciated.
Other than the 'side effects' people can get is there really any strong evidence out there to suggest that the drug is dangerous? What sort of issues would a blood test be looking for? Thanks
AnticoagulateNow- My Cardiac consultant has told me that ablation is the final resort , as it has so many possible side effects. He suggested changing from bisoprolol to flecanide, but because of the side effects it was agreed to continue as I am for now, the more common side effects could have a significant impact on my business, and while I'm coping I'd rather not change .Yan, good luck and enjoy.
Thank you Mary. Just to chip in on the bisopropol v flecainide debate. I've heard lots of people on here talking about the dangers and side effects of flecainide but not that many actually experiencing such. In contrast I've heard a lot of people talking about how bisopropol makes them feel ill/tired etc. For me, flecainide made me feel slightly nauseous/headachy for a couple of weeks but then the effects passed completely.
Thank you- I have to say, I do feel ill/ tired on a daily basis, and put ti down to the condition but flecainide seems to be a far more 'toxic' medication of the two? Before this, I would never take anything unless it was vital. I hate taking medication.
Then get a consultation with an Electrophysiologist. You have absolutely nothing to loose apart from a few pounds getting to the hospital clinic. There is a list of names on the main AFA website.
Electrophysiologists (EP) are the "electricians" in the medical world and are the arithmyia specialists. They also have an extensive knowledge re facets of the different medicines. Getting a referral to an EP does NOT mean that you will even be offered an ablation - you will only get that if they believe that it is appropriate, you will benefit from it no you are suitable for it.
Side effects of an ablation? What side effects? Like any 'surgical procedure' it carries risks, of course, but they really are very small. Back in 2010, my elderly (senior?) cardiologist described ablation as 'tearing out the inside of of the heart' and he told me he would never have it done if he ever developed AF. After far too long, I dumped him and went to an EP and since then, have never looked back.
I wasted five long years, listening to doom merchants and procrastinating over ablation therapy and towards the end I was fast approaching permanent AF. A simple ablation procedure - which unremarkably, and in common with thousands, I survived - and I'm now in my ninth month of being AF free. It's absolutely wonderful and if I'm unlucky and I have to have another, I wouldn't hesitate to put my life on the line and risk it all again. Shock and horror.....
AF must be the only medical condition in the world where the one thing that resembles a cure is regarded as 'a last resort' by so many sufferers. I think Mary, someone has been telling you porkies too.......
It's great that you have a positive success story but I have heard of failures on this forum. Sometimes after 3 procedures too. The standard letter I received from my EP is a scary thing in it's own right! 1 in 200 death/stroke/breathing difficulties etc. (Don't quote me on the stats but I've still got the letter) so I can understand why people fear the procedure. I've also heard people say that they'd wished they had experimented with the drugs first before rushing into ablation. Everyone has their own story though don't they..!
But it seems that many more wish they had gone for their ablation much sooner!!!!
As Bob says the letters are essentially just designed to prevent you from suing. Also they will probably say up to so in fact 1 in 100,000 would still be up to. On that basis many EPs would have a couple of deaths a year!!!! Have you seen that in the statistics / analysis of procedures undertaken or in the press? I certainly haven't!!!!
They even alloacate risks on minor things such as cutting back or trimming ingrowing toe nails!!!! Another area is to look at pregnancy and child birth statistics. If you added up all the 1 in 100 statistics, etc I bet every other child born would have problems / ill health!!!
I would love to get to grips with / understand medical statistics because they seem to have something that is quite different to other areas and seem to be so conservative.
Yes, I know. I showed the letter to my trusted and faithful GP and he explained that the figures include all of the elderly people that have additional 'serious' and complex issues, which sort of puts things into perspective. However, when I met my EP (who is reknown at Leicester's Glenfield Hospital) he did actually repeat all of these stats verbally to me...it seemed that the most common issue is potentially leaving you with breathing difficulties for up to 12mnths before they correct themselves, although I have never heard anyone on this forum mentioning this!
So what if it provides a cure!!! The cure may be full or in a few cases partial. How many actually get the breathing difficulties? How many more would have developed it anyway? How many more who DID have an ablation with no breathing difficulties would have developed breathing difficulties if they had NOT had an ablation.
Consultants and hospitals have to state a plethora of things to cover their backsides and protect from claims as best as they can.
We all need to be very wary about a plethora of protective warnings and statistics.
I don't want to prolong this discussion unnecessarily Yan but I would like to clarify the issue of 'ablation failures'. I assume you mean cases where a 'number' of ablation procedures fail to terminate the AF. Yes, I agree there are too many of these but that's very different from life-threatening or life-changing medical risks associated with the procedure.
While sadly, ablations do not work for everyone, I'd be fairly confident that, if stats were explored, the reason for the majority of those failures would be down to the fact that individuals waited too long before embarking on ablation therapy.
My consultant told me that the ablation procedure is a high risk procedure as it burns away parts of the electrical pathways and at this stage should be considered last resort. If you can't take the word of the 'top' cardiologist who can you trust?
An EP, a fully qualified cardiologist who has specialised in your particular condition.
Mary, you have been ill advised just as I was by my first cardiologist who viewed ablation as witchcraft. You've said you "feel ill and tired on a daily basis". Do you really want to feel like that for the rest of your life?
If you do nothing else, at least see an EP for a second opinion.
That used to be the case and you used to have to have two failed drug regimes. However in England that is no longer true and they can do go straight to ablations.
Yes I know drugs do not cure AF. I also didn't say I want to live with it. If I get to a really bad place as I know a lot of people on here have of course I would opt for ablation. I am just quoting what my EP told me just 6 months ago. Maybe because I have paroxysmal AF and only take Bisoprolol as pill in the pocket he is happy for me to stay with that treatment until an ablation is appropriate? I am also aware that ablations are said to be more successful if done sooner rather then later
My thoughts are that if an ablation is done ( and maybe more than once ) scar tissue in the heart is there forever, and if better treatments come along in the future someone who has had failed ablations would not be candidates for these new treatments?
Interesting viewpoint. Don't go for a probable cure which is available now - wait until something else comes along that might, just might, be better. Meanwhile, Option 1 may be slipping out of reach and you have no idea how long it will be - if ever - before an Option 2 arrives.
I suppose loobylou, if your quality of life is as good as it was pre-AF, that must seem a reasonable pathway. But you know as well as I do, that it will change and when it does I really hope Option 1 is still available for you.
You say you "only take bisoprolol" No anticoagulant? If that is the case - now who's taking risks?
I was already in persistent AF when I was diagniosed 16 months ago and have deteriorated quite a lot in that time. I had my first ablation at the end of March last year and my EP told me in advance there was no chance it would work first time. However that did not stop me having it and I am waiting for my second.
I can assure you and categorically state that if I had the option of an ablation before getting into persistent AF then I would have grabbed it with both hands, both feet, my mouth and anything he else I could.
Depends on your level of acceptance of risk in your life. Life is one big risk but some activities increase risk. Being an AFIB guy myself, I would never run a marathon. Running to prove what? My body has already now for years proven to me I can't perform to the level I did when I was 21. So what! Seems a bit much to compare not running a marathon with giving up in life. Geez, there's so much more out there to do besides doing a huge long run. Heck, my wife and I travel the world, workout at the gym 3X week at least, bike, xcountry ski, hike all over in Colorado. None of that is nearly as risky as what you're about ready to do. STRESS is a big factor in AFIB. You would think that a marathon is just a BIT stressful. I'd reconsider if I were you, my friend.
Hi, thank you for the response. You talk sense. I can't argue with that. All I can really say is that everyone is different! You have obviously got a nice balance in life which suits you. Sounds wonderful actually!! Best wishes. Yan
When i was initially put on flecanide i had to have a stress test to see how the flecanide was affecting my heart when it was beating faster than normal. I believe flecanide does have the ability to produce a more dangerous rhythm at the higher levels. Anyway i was deemed to be o.k. but personally i wouldnt want to tempt fate. That is only my opinion and i do totally understand howdepressing it is to think of stopping something you love. Why not get the stress test done if you havnt already just to be on the safe side?
Interesting. Thank you. The thing with running long distances, in my experience, is that everthing seems to settle down when you get into 'that rhythm'. It seems to be the faster, shorter runs that for me stress the heart a lot more.
Yan, if you're not a natural runner, it might be worth having some running lessons to make the running easier. I had 6 sessions with The Running School which really made a difference to the way that I ran and made it far more productive.
I just wanted to say a Big 'Thank you' to everyone who has commented, said their piece, and also for those that have actually donated to my fundraising. You certainly are a very special group of people. I have only been part of this group for a short time but it has been so worthwhile, so helpful and I am still learning so much for everyone. You all deserve medals honestly! It is refreshing too that there are so many people with differing experiences and opinons. If everyone agreed, it would be boring! Thanks to you all not just for this post, but for all those that have advised and helped me on my AF journey since last Summer. I know that if I did have any major concerns/worries, I could come to all of you at the drop of a hat and that means a lot. Especially to have the support and care from people that have never met each other and apart from AF have perhaps got little in common. It speaks volumes though that this really doesn't matter. Since being diagnosed with AF I have told very few people. I have not posted it on Facebook etc. as I do not want the sympathy and don't want to be treated any differently and talked about as the bloke who has a heart condition. I did for a moment think about putting it on my sponsorship page as a hard luck story, but so glad I didn't, that would have just been sad. Anyway, a little bit belated, but I wish you all the very best of Good Health and Happiness for this New Year. Yan
I have replied to this already, but wanted to add a point I have made elsewhere on this forum.
When I first had AFib I was put on arycor for a month and when that didn't work he cardioverted me. I asked my doctor if i could mountain bike during that month when I was on arycor. His ONLY concern was that if i fell i would bleed and bruise badly because of the blood thinners. I got cardioverted on a Wednesday and did a mountain bike that Saturday - my wife asked him if i should do the mountain bike race so soon after a cardioversion and his response was "of course, he is even more ready for it now".
After my second bout of A-fib i asked him very specifically about training at quite high intensity to get fit for mountain biking and jogging. He kept on nodding saying its fine, its fine and ended the conversation with "you will never get me to give you an excuse not to exercise".
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