• This topic has 47 replies, 17 voices, and was last updated 9 years ago by NZCol.
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  • Atrial Fibrillation – give it to me straight.
  • wait4me
    Full Member

    So I’ve just been diagnosed with AF and have been put on warfarin and beta blockers. I’m 46 and have exercised pretty much every day of my adult life. Family history appears to have buggered me though sadly. Seeing a consultant soon to find out more. Seems like the AF is infrequent, maybe every couple of years, but think I’m on the pills for life.

    So will my life change, and to what degree? Do the drugs make a big difference to performance? I’ve not felt great the couple I’ve ridden since finding out, but that is probably just in my head.

    Am sure there are a few on here that have gone through what I’m experiencing now, so give it to me straight Doc.

    ton
    Full Member

    i have been in permenant af since october 2010. at first it was a complete bastard. i could not ride without almost blacking out, i then stopped riding and put on 4 stone. i then bought a eletric pedal assist bike, which i used for 2yrs. it was fantastic…..allowing me to ride with mates and keep pretty active.
    i went on a certain diet 2yrs ago and dropped 5 stone i also started riding a proper bike again, which i am still doing now, although very slowly.
    i struggle to get above 14mph, and crawl uphill….i can however ride slowly for a long time, managing to do a 500 mile a month thing since the start of the year.
    i have had 2 cardio versions and 2 cardio ablations, all of which did not work, i am still in perm af. i am going in for a op withing the next 2 weeks for a hybrid ablation, which hopefully might sort me out, and hopefully reduce my chance of a stroke.
    one bit of advice is never ever give in to it….ride slow, push up hill slower, change why you ride….ride cos you love it, it is part of you.
    also if treatment does not work, ask for the next level of treatment. they try the easiest and cheapest 1st.

    good luck mate.

    wait4me
    Full Member

    Good God Ton, that sounds truly awful. I’m counting myself lucky already.

    ton
    Full Member

    it has been pretty grim to be honest. i went from riding all the time with a huge circle of friends, to not riding at all.
    i have however saved a shed load of cash…..i was what you would call a serial bike buyer, on a major scale. i now have 1 bike which i have done well over 3000 mile on since new year….it is quite a nice feeling.
    also, my biggest bonus is that now my wife in my main riding partner now…she wanted to go touring, so i bought her a surly troll in january. we ride every weekend, and have been touring for a week earlier in the year, and are going again in september.
    so i see it has a dark cloud, with a very shiny silver lining…. 😀

    ceepers
    Full Member

    I can’t comment on the af but the warfarin is somthing you need to be aware of. It affects how easily your blood clots . You will have an INR score which is basically how many times longer it takes you to stop bleeding compared to a “normal person”

    Most peoples target INR is between 2 & 4. This means you will bruise more easily and if you cut yourself it’s gonna bleed a lot. Worth learning about some first aid and carrying some kit routinely just in case

    ton
    Full Member

    and come winter, you will be 2 coats colder if you are still on warfarin.

    girlonwheels
    Free Member

    My dad had this and it took quite a bit of diagnosing. He is also on warfarin. He’s sort of fine now and has found that some herbal remedies have helped (?)… the biggest thing that’s affected him is the warfarin. He gets regular nose bleeds and if he cuts himself, it takes ages to stop, so be careful on the bike! Ditto the post above too, he really feels the cold!

    He had the ablation about a year ago now and feels much better. He can walk up hills ok without getting out of breath and only has slight AF if he has a drink.

    StirlingCrispin
    Full Member

    I’ve been on warfarin for 30+ years. It’s a bugger.
    Bruising is a massive problem so I try and avoid crashing (one of the reasons I zip around on a hard tail, slow and nadgery is my moto).
    Your practice nurse will become your best friend – I’ve had periods where I’ve been getting two blood tests a week. I’m back up to once every 8 weeks now. I moved GP to get a better nurse. Alternative drugs are now available so ask your GP about that (less monitoring).
    I ride my bike in sub-zero temps (-20C is my record) and had never heard the two coats myth,

    Good luck!

    wheeleeneelee
    Free Member

    Are you permanently out of rhythm – or in and out? Warfarin may just be temporary until course of action agreed. Speak to specialist about your particular situation – Cardiologist and Electrophysiologist. Lots of options. Its not uncommon in fit cyclists and runners. It doesn’t slow Michael Jamieson down much… http://m.scotsman.com/sport/more-sport/other/michael-jamieson-dives-back-in-after-heart-scare-1-3216594 (ignore the attention seeking headline!)

    flap_jack
    Free Member

    Sis-in-law had a successful ablation and is on no meds and exercising hard.

    Good luck.

    mudmuncher
    Full Member

    If you are saying you will get it every few years then warfarin seems a bit OTT. Someone I know has had it 3 or 4 times starting in his 20s but not lasting more than a day. No AF for the last 7 or 8 years now and no meds ever taken.

    ton
    Full Member

    i was on warfarin for the first 3 years, until my last ablation. i am now on asprin along with beta blockers. being on warfarin long term is a pain, weekly blood clinic is a proper pain.

    being in perm af is like riding on wet soggy grass or mud, or into a constant head wind….nice in a perverted sort of way…. 8)

    wait4me
    Full Member

    Thanks for the input guys.

    Yes at present it’s been two proper episodes that I can remember I that have occurred 3yrs apart. I’m guessing that my age and family history are tending towards safety and the use of warfarin at least initially.

    I’m probably getting ahead of myself worrying until I see the cardiologist but got to admit it has shaken me up a bit.

    slowoldgit
    Free Member

    I’ve had intermittent AF for two years. Intermittent except that the drugs have it under control. Check out the Atrial Fibrillation Association website. Warfarin and riding isn’t a big problem, I’m more careful but tend to be out alone anyway. Getting the diet right to balance Vitamin K and Warfarin dosage has been a problem for me. If I started again I’d make a bigger effort there, and pester people for info and help.

    Feel free to ask more.

    legolam
    Free Member

    Have a frank and sensible discussion with your cardiologist – it’s the only way to get answers that are meaningful to your situation. As you can see above, AF covers a multitude of different symptoms and prognoses.

    The best thing that you can do is write down all the things that you want to know about your condition before you see the specialist, no matter how stupid. Don’t leave the clinic room unless you understand the answers and are happy with them.

    There was a lot of hoo-ha in the news this week about new NICE guidelines for blood thinning in AF – basically, they say that aspirin is no longer useful for prevention of strokes and that we should be prescribing warfarin or one of the “novel anticoagulants (NOACs)” to people at risk of a stroke. If you are one of these people who need blood thinning because of your risk of stroke, it’s worth reading up about the pros and cons of warfarin vs. NOACs and asking your cardiologist about this.

    Please ask about how your condition could affect your cycling. Sometimes we don’t realise that some of our patients are actually very active and want to continue to be like that.

    Hope it all gets sorted,
    Hannah (a trainee cardiologist)

    Superficial
    Free Member

    Might be worth having a read, and asking about, “non-vitamin k oral anticoagulants” or NOACs. Latest guidelines suggest those as first line, and I think I would prefer that to warfarin myself (mainly for lack of monitoring).

    As for the reasons for getting AF, it’s increasingly common in more athletic people, especially endurance athletes. A recent study pointed towards a ‘reverse J’ pattern with exercise and general cardiovascular outcomes. So no exercise puts you at the highest risk, but too much looks like it is also harmful. I think what they described as too much was something like strenuous activity for an hour a day at the age of 30 (which I don’t actually think is a crazy amount). Sounds like you’re probably in that category (as am I, unfortunately, although hopefully I’ve got a few years of good health left before that).

    Edit: too slow…
    Edit2: Cite that mofo http://m.heart.bmj.com/content/early/2014/03/18/heartjnl-2013-305242.abstract

    legolam
    Free Member

    It’s worth mentioning that that study only included people who were already known to have coronary artery disease ie already had angina or had had a heart attack. I’m not sure that it’s applicable to those without heart disease.

    To my knowledge, there’s a small amount of evidence showing an increased risk of developing AF in older elite endurance athletes (eg elite ultra marathon runners in their 50s), but not for the rest of us mere mortals.

    phinbob
    Full Member

    Err. I hate to ask this but if I were getting AF fairly regularly for a few hours at time – especially if I’m dehydrated, I should probably go and get some medical advice?

    I did the first time and they said I was fine (had ECG & blood work) but it had stopped by then. I can pretty much generate it at will – by not drinking enough and then hitting the trails too hard.

    I *really* don’t want to stop riding or running. How likely am I to die?

    willard
    Full Member

    You can’t think of this as being likely to die after an episode. Your hear is still pumping blood, just not that efficiently compared to normal (hence the nearly blacking out like Ton says).

    The problem comes when you go back into rhythm… Because your bloody has been swirling inefficiently in the heart, it is _possible_ that small clots could form and, when normal service is resumed, these small clots _might_ leave the heart before being broken down and head out to parts unknown, hence the risk of stroke and the use of warfarin or something like clexane/heparin in a clinical situation. You could use asparin in a home situation to thin your blood slightly, but if you are in AF, it’s usually best to get the proper tools for the job.

    If your AF is limited and a long time between episodes, then the chances of being able to identify the source and get it treated is probably good. My AF was pretty similar to a lot of the ones on here (dehydration, tired, stressed/angry used to set me off) and only happened once in a while. I went in for EPS mapping to Papwroth where they surmised that it was to do with rogue electrical impulses coming into the left atria down the pulmonary veins. Fast forward several years and I am back in Papworth having the area around the pulmonary veins burned to make them non-conductive (that’s the ablation Ton talked about).

    In my case, it worked and I am back to what counts as normal, despite knowing for a fact I’ve had this since I was a child. Note that last bit though, I’ve had episodic AF since being at least 15 and I am not dead yet. You are not dead till your heart stops. In our cases, it’s just beating a lot faster than normal and this can be fixed.

    Ton,

    I am really hopeful that they are going to sort you out this time. It sounds like you are at the forefront of technology and research into AF. Good luck and keep us posted on how it turns out.

    Superficial
    Free Member

    Here’s the article I actually meant to cite…
    http://m.heart.bmj.com/content/early/2014/03/25/heartjnl-2013-305304.abstract

    Phinbob – are you sure it is AF you are having? Having a few extra beats can feel like your pulse is irregular and can be associated with dehydration/electrolyte imbalance (but doesn’t have the stroke risks of AF). On the other hand, these things are quite important and knowing if you have AF allows you to do something to mitigate the risks. See your GP – they can arrange for you to wear a monitor to record one of these episodes.

    ton
    Full Member

    that small clots could form and, when normal service is resumed, these small clots _might_ leave the heart before being broken down and head out to parts

    the procedure that I am going in for is to remove a sack attached to the heart, where blood pools and clots. removing the sack reduces the risk of stoke a fair bit (hopefully).

    also when I had my last ablation, the surgeon was unable to reach some area’s in my heart, so this time they will be trying to do this area on the outside of the heart.

    Willard, I will keep you posted.

    molgrips
    Free Member

    Superficial, are you a bit of a cardiologist?

    Re the OP – now I’m not a doctor, but I get the impression some docs would rather have your issue fixed medically without taking into account your actual lifestyle needs. My dad would have an episode every few years like you, and at first they put him on beta blockers. However he suffered, being unable to walk up any kind of hill at any pace. So with a different doc they now manage it differently and he’s in a better place mentally.

    slowoldgit
    Free Member

    Let’s not give people the impression that beta blockers will stop you walking uphill. They have an effect on me, I notice cold hands, feet and ears, but I’m still out doing stuff. A bit slower though, but remember I’ve passed sixty and have some other history. I managed a 50k ride in Strathspey last month, 30k locally last Sat.

    molgrips
    Free Member

    They didn’t stop my dad walking up hill, but they made him incredibly slow doing it whilst huffing and puffing a lot.

    YMMV of course.

    wait4me
    Full Member

    Thanks so much for your input everyone, they say it’s good to talk and I’m feeling a little more positive already.

    Firstly Phinbob, you don’t sound that different to me. First time I noticed it and flutters had gone by time I got to Gp. Sent for blood tests and all ok. I was a bit stressed at work at that time and really went to GP to get blood pressure checked out, which was fine. THis second time was after a ride. Wife hassled me into going to A&E as she is massively paranoid about stroke since her father had a catastrophic one 15yrs ago. ECG showed it up. This episode lasted over 24hrs, so my GP got to see it too.

    I think there’s every possibility that having the week off work on holiday, a couple of extra bottles of vino over the week, a bit of dehydration from what was a warm week, plus exercise was the trigger. I’ve plenty of HRM data from my GArmin and have never seen random spikes or anything that has made me concerned.

    Apparently the consultant I’m seeing is very forward thinking. I’m sure the GPs first instinct is to use anti-coagulant just in case the AF has been bubbling under over a long period of time, but hopefully from what you guys are saying this May be short term. I certainly hope so.

    Again thank you so much for taking time to post, can’t tell you how much I appreciate it.

    slowoldgit
    Free Member

    I kept asking my doc to try different b-bs, maybe your dad should? Statins, though, are the work of the devil.

    wait4me
    Full Member

    Re beta blockers; they lower max heart rate, is that correct? I’ve ridden twice on them now and have noticed my average is lower as is what would be my upper threshold. As said initially could be in my head, but can see how will limit effort.

    molgrips
    Free Member

    He’s off them now anyway – on wharfarin and god knows what else for DVT problems.. ta though 🙂

    slowoldgit
    Free Member

    I just read the leaflet that comes in the beta blockers carton. You know, the annoying thing that stops you sliding your meds back in the packet, so you bin it.

    “They help slow the heart beat, and relax the blood vessels. This reduces blood pressure and the heart’s demand for oxygen.”

    Your hopes of a PB may now be on hold, but you can ride for fun and catch the views.

    wait4me
    Full Member

    The frustrating thing is I’ve always been very proud of my low resting HR. I took it 18months ago when I got my new Garmin 500. 38bpm. I don’t bother as a rule as low HR doesn’t hide the fact I’m no athlete. But it felt like I’d been doing the right thing over the years by swimming, running and cycling (all to a thoroughly average standard!)

    I’ve mentioned this to GP but he says stick with pills for time being.

    slowoldgit
    Free Member

    I bet your GP didn’t say ‘stop exercising’. My AF, and the TIA that resulted, are in my mind associated with a brief spell that I spent as a couch potato. That was as a result of stuff we won’t go into.

    slowoldgit
    Free Member
    wait4me
    Full Member

    No, said carry on but take it easy. Might be better off logging out of Strava for the time being

    😕

    willard
    Full Member

    I am not a doctor, but when I had AF I was forced to think very carefully about how and what I did for exercise. That said, I still played a lot of paintball the whole time that I was untreated (with the exception of being on Flecainide) and am not dead yet. I did feel pretty ropey when I was first on the tablets though, lots of nausea and constipation. not fun, but they worked well.

    When I had the AF treated, I started actually doing exercise for about the first time in my life. Near enough dead on a year after the op and I had run my first ever 10k and in 47 minutes too. Since then I have done more 10ks, joined the Army, run half marathons and further. I am convinced that being fit is a way to keep it at bay, so I keep fit. I also don’t drink that much either as I read that this can be a trigger.

    Look, You have to be positive about this. You’ve identified a couple of triggers, so steer clear of them. It’s ok to have a few drinks, but just don’t drink a lot when you are dehydrated/tired and/or when you have to do exercise the next day. Keep doing exercise, but just don’t go mad on it.

    DO NOT LET IT RULE YOUR LIFE!! I mean, look at Tom. He’s found a way of doing something that he loves despite AF.

    wheeleeneelee
    Free Member

    My resting heart beat is around 40 which cardiologist explained may have been a factor – bigger gaps between beats means more room for potential irregular beats. Alcohol and dehydration were main factors in going out of rhythm for me . On Flecanide and not slowed me down on bike. No booze has helped with riding

    natrix
    Free Member

    If blood tests at the GPs are a pain why not get a home tester (or isn’t it that simple)??

    I may be going on warfarin within a few years so am interested in the tests etc.

    phinbob
    Full Member

    This is all interesting stuff.

    I’m not sure if it’s AF, but I get a very irregular heartbeat for several hours, it’s nearly always tied to exercise and/or dehydration. I’m managing it better by making sure I’m fully hydrated and not drinking too much alcohol, but it’s a pain in the backside.

    I think I’ll see a cardiologist.

    ceepers
    Full Member

    @natrix

    There’s no home test as far as I know. The test is to calculate inr as I posted earlier. The tested inr relative to what your target inr is dictates your warfarin dose. If inr is too low risk of clots is high, if inr creeps too high there is risk of severe bleeding and death by haemorrhage.

    From my own point of view, make sure tour teeth are in good shape. If you are on warfarin and you need a tooth out it can be a nightmare. Best to get your mouth sorted so there’s no risk of that!

    Superficial
    Free Member

    Superficial, are you a bit of a cardiologist?

    One day, fingers crossed. For now I’m just a lowly hospital doctor (SHO).

    natrix
    Free Member

    Ceepers, see here for more info on home testing http://www.acsma.org.uk/

    Thanks for the tip on teeth :mrgreen:

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