[Closed] Atrial Fibrillation - give it to me straight.

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.

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

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.... 😀

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

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

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.

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!

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!)

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

Good luck.

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.

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)

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.

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.

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)

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

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.

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?

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.

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.

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.

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.

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.

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.

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.

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

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.

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

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.

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.

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.

http://www.atrialfibrillation.org.uk/

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

😕

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.

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

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.

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.

@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, are you a bit of a cardiologist?

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

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

Thanks for the tip on teeth

Friend of mine has AF badly, he's a multiple world adventure racing winner and manages it doing that !

we have had a few AF threads over the last couple of years, people come on and say 'i have af and i can still ride or my mate has af and he can compete in races'
when i read things like this, i assume that they are talking about paroxysmal fibrilation, where they have short bouts of af.
i cant believe that anyone with permanent af can race/compete/whatever at any kind of good standard.

@natrix

Thanks for the link, I wasn't aware of that but more people self monitoring would really help us out. Sometimes we need a test on the morning of a day of treatment and getting one can be a real logistical nightmare!

Ton, I agree totally.

I had one very bad experience back in 2000 with AF. I was competing in a paintball tournament and got hit with a bout of AF in the closing seconds of a game. It was just before lunch, but I had to sit out the next game to be safe. At one point I thought things had settled down, so I left the safe area and walked outside to see how my team were doing. Within 20 yards, my eyesight had gone from normal to very small bits of daylight in a sea of black and I had to sit down. I was still there when the team got back 30 minutes later.

Luckily Flecainide works well for me (apart from the nausea etc) and I was right as rain a couple of hours later. There is no way I would have been able to run or do anything like that though.

Thought about this a lot over the weekend, don't know if this will help or not. Its an email from Kevin he sent last year and as far as Im aware its the only time he has tried to describe what is happening to him and how he felt.

I’m Kevin, Tracey’s husband on Singletrack. I was diagnosed with AF just over two years ago aged 54. Had been bad for a while but didn’t know what was wrong with me. When it was finally diagnosed I was suffering for up 18 hours a day and I am told by Tracey that she could feel it in my sleep. I thought I was going to die before they diagnosed it and although I was working I felt crap all the time. Biking and other sports went out of the window as just like you any sign of effort or uphill and I thought I would pass out. I was put on a multitude of tablets and had all sorts of tests but nothing was working. I was then put on a waiting list for a cardiac ablation and am still waiting. It was very hard to go from riding most weekends and holidays in the Alps to doing nothing. It was dictating my whole life. I managed a few rides but the uphill’s and any effort seemed to be killing me. In August 2012 we went to the Alps on a pre-booked 2 weeks biking family holiday and I felt shattered every day. Even missed some days. In April this year I took matters into my own hands and set off to either get better or kill myself trying. By this time my quality of life had hit rock bottom. We spent some money and I had built a lighter do all bike and gave my Enduro to Abigale my youngest daughter. I joined a gym and with the help of work mates we went every weekday morning before work. When I got home at night I did the same, to become boring, 7 mile off road route every night. Not much of uphill’s apart from one half a mile from home. I also packed in drinking, caffeine and salt. The last uphill was gruelling at first and I had to push it up. But each day got better. Rain or shine I was out there. After three months I had lost 3 stone and was down to 12 and a half stone. The hills got better and I started to go out with Tracey and Abigale. They were amazed at the change in me.
We had booked to go back to Verbier in August and I told the girls this was to be my last trip with them. I visited the doctors two weeks before we went and told them I was stopping my medication, not really a good idea. We agreed that I could reduce it and see how it would go but was advised that biking in the alps was a no no. We went out and I had the best holiday I had had in a long time. Last week the hospital took me of all my meds. I haven’t suffered with any AF since June and will be going back to the Alps next year. It’s been long and hard and I still get tired. I don’t know if this will help you but If you feel like I did then keep digging in and try not to let it get you down. Two years ago Id had enough and thought the end was near. I now look forward to every day and can’t wait to be out in the Peak this weekend. I’m 57 on Friday and hope to be out on the bike weather permitting and then on the Peak Pootle on Sunday. I couldn’t explain to anyone what I was going through and still find it difficult to get it across

A further update

He had an appointment at Sheffield Northern General and after a long and frank discussion, which included me, turned down the cardiac ablation operation. Carries pills in the pocket just in case, but not had to use them [beta blockers and Flecainide].

He is still going to the gym every morning, out on his bike when he can, and looks shattered every night. We did Wharncliffe yesterday and apart from one big climb he managed everything.

We are going back to the Alps again this year and he's looking forward to it.

Its a big worry for me and the girls but I don't think and don't want him to change. He thinks his AF is under control but is also aware that it can come back at any time.

Tracey, I was the recipient of the above email.....and it was one of the reasons I upped my miles a went for the 500 mile a month thing. I still cant ride offroad on anything challenging, but after my op (at Sheffield northern too) I am hoping I will be back offroad again with a vengeance.
I hope Kevin keeps well love......... 😀

Good luck with the op. Ill let him know.

Ton, you're right, Nathan had bouts of it but recently it's almost permanent and he did manage to race but hated it. He's in next week for another crack at fixing it. I had it briefly and getting out of bed was enough for me.