[Closed] I've been diagnosed with AF

Drats! That sounds a bit sh1t. Thankfully you spotted it and did the sensible thing and werent in the middle of nowhere.

I cant help with any advice or info, but i hope it settles, as its always good to see you in the STW Zwift series! 😀

I have a couple of cycling buddies who've had it and they've both had Ablations to sort of cure it. One had his quite young and went off to race as a pro in France for a few years. The other, a local coach, had his mid 40s. He's still a very strong cyclist but his HR response to increases in effort has a large turbo lag so he can't switch on/off his top end power without 10 minutes warning, means he can't race anymore, but can still bang out 300 Watts on a road bike.

Neither use a HR monitor anymore!

I had atrial fibrillation and atrial flutter permanently. Had ablations to sort it out and much better now, but still on bisoprolol just in case, which is a bit of a rev limiter.

Some doctors seem to go down the drugs for life path, but the landscape is changing and the more progressive are going for ablations to sort it out unless there is another risk factor. I had the former at first, and I bypassed him to go to the Frankfurt hospital which is an international training centre for heart rhythm issues.

Exercise routine will depend on if you have paroxysmal AF or persistent AF, you can exercise with both, but may be restricted as to when if you have paroxysmal AF as it is not recommended to exercise with paroxysmal AF if your HR is in it's raised state.

Generally with Persistent AF that is well controlled with medication, you can exercise when you want, just possibly not up to the same high intensity levels as previously.

Welcome to the club! 🙁

There's definitely a few threads on here.. although the history seems to have been removed for some reason.

What nealglover said. My biggest fear was that my sea swimming would be too dangerous - but it's fine, occasional rests, cos the beta-blockers reduce your stamina somewhat, and I can swim almost as far as I did before. Climbing hills on a moutain bike is a killer though! (not literally)

Give the BHF nurses a call - they'll be able to chat you through all the ins and outs.

0300 330 3311 or hearthelpline@bhf.org.uk

Cheers all for the initial feedback and advice. I realize my biking may have to be toned down a bit, hopefully not too much so I can still do some hard efforts and longer rides. Let's be honest I was never going to the Olympics or grand tours anyway 😀

@v7fmp Hopefully I will be back on the STW Zwift races in time and can still show up! Might have to miss the Autumn series though depending on how this goes.

@MSP They have started me on bisoprolol too. The plan seems to be meds first, then maybe turn me off and on again if needed, then I think it will be ablations.

Just hoping for a bit of "normal" really, I don't want it to impact the things I love to do, but I'll adapt as I have to.

Got diagnosed with AF a looooong time ago and it took me by surprise and made me angry and depressed for a long time too. After a number of years, the first couple taking Flecainide, I got an operation that basically fixed it.

This next few weeks will be tough on you, but you have to remember that this _can_ be both kept under control and fixed. It is not the end of your life (like I thought at the time), it just means that you might have to make a few changes to how you do things. Please try not to worry to much and get too wound up in it, I did and it messed me up really quite badly for a very long time.

If I can offer one piece of advice, it would be to avoid reading too much about the AF or it's treatment on the Internet. Most of the information is from the US and their treatment is different to the NHS.

Also ask about options for EPS mapping and RF abalation if they are suitable treatments for the version you have. There may be a waiting list, but they might be future options.

I haven't reached that point yet, just the occasional misfiring... But on the hangover thing, alcohol is a definite trigger in my experience. Best thing you can do other than a generally healthy and active lifestyle is cut that out.

I'll respond in more detail in a bit but I can recommend the book 'haywire heart' for some good insight

I'm a doctor, deal with this stuff all the time. The basic process is:

1) Sort out the acute stuff, check you're safe
2) Decide on anticoagulation (blood thinners)
3) Restore sinus rhythm, usually with an elective electrical cardioversion (after ≥ 3-4 weeks of anticoagulation)
4) Wait and see what happens

If you still have frequent problems, that's when you need to have an honest chat with an EP cardiologist about your options for longer-term management. Broadly speaking these are put up & shut up (plenty of people can manage with AF and don't find the symptoms too intrusive) / drugs / ablation. That depends on your frequency / severity of symptoms, age, other health issues and attitude to risk. None are particularly 'easy' and the ablation route can be long waits and sometimes need for redo procedures. In parallel, everyone who is overweight and has AF should aggressively address that concurrently.

If I can offer one piece of advice, it would be to avoid reading too much about the AF or it’s treatment on the Internet. Most of the information is from the US and their treatment is different to the NHS.

I don't think there's much difference in management of AF in the US vs UK, except that they're financially incentivised to do procedures. I would agree with 'avoid reading too much on the internet', although from what I've read over the years, I haven't really seen any bad / crazy heart rhythm advice from here - and plenty of people here have been in your shoes before.

Thanks @willard @butcher and @el_boufador, some good points made. I'm not depressed about it yet, I'm just hoping for some element of normality as mentioned above, and am prepared to make changes to do that.
Alcohol could be the trigger for sure and right now I'm considering cutting it even though I only really had 2 or 3 on a weekend evening. I will definitely take it down to just now and again.

Some good things to look into, I will definitely take a look at the book.

BIL and MIL have AF. BIL is the worlds biggest wuss (god knows how he survived the Navy) and has to go for a lie down, or take the day off if not feeling great.

MIL's knackered anyway, but if she's ever in hospital they ask do you have AF, or had a heart attack, 'No she says' then hands over her warfarin card with the letters AF on the front ! Her HR readout is literally all over the shop, 60, 90, 80, 60, 70. Nothing steady. She's still here.

Hi @oopnorth, I've nothing useful to add, I'm another in @v7fmp's camp of people who don't like to see a cycling companion in this position... I hope you're feeling OK day to day and start making your way through @superficial's helpful list soon! Look forward to seeing you in zwift if/when things settle.

Good information @superficial,very helpful. It's early days so first it's the clinic and observations to see which way they need to go, right now I just want them to get the breathing and HR on a better track. Hopefully then I can look at getting back on the turbo or something at a light rate.

Once again cheers for all the help and well wishes. Thanks @savoyad

My wife went into AF after doing an ultra marathon on a hot day. Took over 24 hours in hospital before it suddenly sorted itself out. She was scheduled to have it (hopefully) shocked back into rhythm when the drugs (presumably) kicked in. That was over a year ago now though and she's been fine since. Even done a few more ultras that were longer and tougher (hotter) than the one where it happened and plenty of tough training runs. So don't despair yet.

Good to hear @roverpig, glad your wife has had positive results and has managed to keep doing the ultra marathons. I take it she is still on the meds which are keeping her stable?

oopnorth, regarding you comment about being on thinners for the rest of you life......not necessarily so mate.

10 years ago i went into permanent AF. long story but i had every procedure available to try and get back in normal rhythm.
2 x cardo versions. 2 x cardio ablations. neither worked.
so i went to see a specialist in sheffield. he too said i was stuck for good in AF. but he decided to do a procedure to lessen my risk of having a stroke from it.
he did a keyhole op to remove my left atrial appendage. this is where a stroke starts from whilst in AF.
while he was inside with the camera, he found the problem,i had a hole in valve which was stopping treatment working.
so he had to open my chest up to mend this. he then performed a Cox Maze procedure.

https://www.stopafib.org/maze-surgery.cfm

this fixed the AF. i have been back in normal rhythm since 2016.
stopped taking warfarin and every other drug straight after the surgery.
back on the bike 10 days after surgery.
now riding between 100 and 150 miles a week, and as fit as i can be i suppose.

if it gets to the stage where they say that's it, it may not be.

good luck.

Diagnosed 5 years ago...brought on by exercise. Had an ablation, sorted it. No long term drugs needed. Consultant said he was seeing more cyclists with it cos you work you heart harder for longer than many other sports.
Anyway, no further episodes and done a lot of big riding since.

Good to hear @roverpig, glad your wife has had positive results and has managed to keep doing the ultra marathons. I take it she is still on the meds which are keeping her stable?

No, it was strange as it took quite a while for them to get it under control. As I say, they were going to try to shock it back which didn't sound like fun. But once it flipped back it was fine and she's not been on any drugs or anything since. She did the 24 hour ECG thing but that didn't show anything. She's very careful with her salt intake on long runs as the blood tests showed low magnesium (I think) but no idea whether that really has anything to do with it.

@oopnorth I’m sorry to hear about that but I’m sure you will find a way to cope with it. My mum suddenly started suffering from or I should really phrase it living with Af about 4 years ago.

It’s so complex but the key things seem to be getting the balance right between the blockers and whatever the other tablets are, too much of one or the other affected energy levels or the likelihood of more frequent episodes or severity. She just takes a tablet now when she gets a bad episode but try’s to get through the smaller ones without. She’s in two minds about having the op due to her age.

One thing though is she was told to cut out all stimulants, caffeine and alcohol immediately she confuses me as you seem to be thinking about it, I thought you would have been advised to do this already.

Keep well and I hope you aren’t too adversely affected, I’m sure you’ll find a way to cope as normal as possible.

Thanks for all the stories guys, it gives me hope. Feel wasted this evening but it's the first week and as mentioned I don't think the tablets are doing their thing. Hopefully the clinic on Sunday will sort that.

So glad that some of you have got through this in your own ways and have become drug free and back on the bikes as normal...fingers crossed for that one.
Anyway the stimulants have gone for now although I've not been advised to at this stage. On de-caff, etc, health is more important.

No experience of it but like others have said, best of luck getting it under control and hurry back for the STW Zwift racing and just generally being out and about on the bike!

Hey @oopnorth I've not got AF but I do have another heart rhythm disorder - premature ventricular contractions (PVCs) brought on by exercise.
(Though I suspect I may have had a single episode of AF, which ended me up in a&e)

PVCs are a very different condition to AF but I certainly have found it to be tough to deal with at times.

For me, there was a period this spring when I was getting some very severe palpitations and also dizziness when trying to do any exercise, doctors didn't know what was wrong, telling me to not do anything strenuous in case of possible sudden death! I thought my biking days were over. That was a really really shit time, tbh.

Anyway since then I have cut back on alcohol (not stopped completely), I'm paying a lot more attention to hydration and sleep, not pushing myself so hard (generally in my life I mean) and supplementing magnesium.
Being dehydrated, stressed, rundown generally are the main triggers for me.
I also had a period of a couple of months when I detrained on doctors orders which I think helped it to subside.

After lots of tests that have ruled out anything serious I am now back to riding at almost the same intensity as I was before, with still some symptoms but much reduced and no further a&e visits!

I have also tried beta blockers (bisoprolol) worked a bit for symptoms but found the downsides worse than the upsides.

I am considering an ablation, to deal with the mental effects of it (keep feeling my heart stopping!) rather than because it is limiting my physical activities.

Hope you see some improvement - all the best

Tough times @el_boufador but glad you have managed to control it and get back on the bike.

Right now I just feel in limbo but that will pass, my aim is to get back biking whatever it takes and all the stories above make me sure that can happen.
Hopefully the clinic tomorrow will be able to help with these current issues and calm things down.

I’ve had maybe 10 episodes of AF in my life but nothing now for over 10 years. My heart generally went back to normal rhythm within a week but was once ‘shocked’ back in. After I had AF I was generally put on various drugs but every time I saw the senior cardiologist, he told me not to bother with the drugs. The cause of my AF appeared to be stress so once that was addressed, no issues other than the odd ‘missed beat’.

This is all very strange to hear! My consultant that put me on the drugs, what 3-4 years ago? never suggested there was any other way to get the heart back to normal rhythm other than electric shock.
I’ve never had my meds reviewed, or had any other treatment discussed… is it because my AF is mild and I have no other symptoms, or have I just been neglected?? Who do I go to to find out?

DezB, is your heart permanently in AF or do you just get episodes and then need it shocked back to normal rhythm?

Permanently

Consultant’s description was that some people’s hearts can just work ok arrhythmically. But… is it working ok if I need to keep taking drugs to stop blood clots? Because it beats so fast at times, I have to keep taking beta blockers to avoid heart failure. How can that be ok?!

@DezB that's a strange one. I have been told I'm definitely going to have the reset and then the ablation to get it hopefully permanently fixed. Yes I'm on the meds for now but they are not having that as the sole option, it's just an interim method of control, the plan is to get me off them.

I'd be talking to your cardiologist if I was you.

@DezB - get a second opinion.

I've got two Cardiology Consultants at my local hospital - both have got bad reps (nearing retirement, a bit out of touch, that sort of thing). I went to one of them and basically learned nothing, apart from he likes to use a dictaphone during consultations. So, I decided to get a second opinion privately. Spent 140 quid and hand-picked the consultant based on his resume. No regrets at all; he was brilliant.

AF here. Hopefully controlled by a recent, 2nd ablation. Feeling grand and just started to get back on the bike.

Good luck!

4) Wait and see what happens

This.

I used to have AFiB maybe once a month. Always corrected itself within 9 or so hours. It's happened far, far less since lockdown (3 times in 18 months) I suspect due to more sleep less stress. (I also think there's a psychological aspect. I AFIBed all night Saturday - I suspect as a result of reading and thinking about this thread.)

Your one episode after alcohol barely even counts. It's entirely possible they'll get you back into Sinus Rhythm and it will never happen again.

Even if not, lifestyle changes can make a big difference, alcohol is a big trigger even in small quantities. Probably with pursuing that before you consider ablations. You might even be over training a bit - endurance athletes can get AFIB and it goes away when they de-train a bit. Google 'holiday heart'.

I've been told by two consultants you only need blood thinners if you have two stroke risk factors. So you most likely won't be on drugs for life.

I think you can relax a fair bit and start to worry if it happens a lot more, not now.

Best of luck, whatever happens you've certainly been prepared for the worst case!

^^ interesting one that. Could list the bits I disagree with (lifestyle, stress, alcohol) but it's actually pretty much all of it. But I guess it was aimed at someone else.

Got to book docs appt for my recent issue with headaches, so will discuss then, hopefully.

^^ interesting one that. Could list the bits I disagree with (lifestyle, stress, alcohol) but it’s actually pretty much all of it. But I guess it was aimed at someone else.

Certainly wasn't aimed at you, you seem to be in a very different situation to the OP.

I don't think triggers are especially controversial:

https://www.nhs.uk/conditions/atrial-fibrillation/causes/

DezB i can give you the name of the surgeon at sheffield who sorted me out.
i contacted him myself after doing some homework. and after 2 failed ablations at LGI.

Even if not, lifestyle changes can make a big difference, alcohol is a big trigger even in small quantities.

Already addressed that*, and the caffeine.

Right now I still have a HR that is all over the place, even when resting, usually in the mid 80's bpm and does at times go over 100, rarely does it get below 60. I don't care what treatment solves it, as long as my HR can get back to some normality and I can start exercising to some degree again, currently I can't do a flight of stairs without becoming pretty breathless.

*EDIT- I should mention, just so you are clear, that I don't really drink much before people think I some kind of binge drinker. A few pints on a weekend usually, or alternatively a bottle of wine but no more and none mid week.

I've nothing to add apart from repeating don't be despondent, it's definately way too early to assume the worst case.

Good luck whatever happens.

ton

DezB i can give you the name of the surgeon at sheffield who sorted me out

Thanks Ton, prob best to find someone a bit more local. I'll do some investigating.

I don’t think triggers are especially controversial:

https://www.nhs.uk/conditions/atrial-fibrillation/causes//blockquote >

Yeah, but they are definitely not the triggers in a hell of a lot of cases. Including mine. That's why I find it irritating - They obviously don't really know what the triggers are and "unhealthy stuff" is just an easy list to slap down.

 

Yeah, but they are definitely not the triggers in a hell of a lot of cases. Including mine. That’s why I find it irritating –

Ahhh, right yeah, agree it doesn't seem to be an exact science. Triggers are deffo not universal truths, I've certainly never had a Eureka moment where I've thought "Ahhh that's what does it." Also they found caffine can reduce AFIB in dogs and I suspect it reduces mine, so there's at least one trigger that might also prevent.

None the less, someone newly diagnosed with AFIB could save themselves a world of grief if they can identify triggers so it's certainly worth experimenting IMHO.

Coffee is probably not a trigger, you’ll be pleased to know.

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2782015

I would generally agree with looking out for things that trigger it (heavy alcohol being an obvious one) but on the whole AF is sporadic / probabilistic so make you don’t get disheartened when you can’t ‘control’ it.

Coffee is probably not a trigger, you’ll be pleased to know.

From link:

each additional daily cup of coffee was associated with a 3% reduced risk of developing an arrhythmia

Obviously I've no objective measure but I always suspected coffee helped rather than triggered in my case.

For me this started shortly after I gave up coffee, quit alcohol, lost 3 stone and dramatically increased my fitness. I've always suspected that wasn't a coincidence and, of that list, Caffine is one bad habit I've considered deliberately getting back into to see what happens.

I think in that study, they mention they are very conscious of the inherent biases of observational studies and 'reverse causality'. Ie you can't infer causality from an observational study showing correlation, but also it's feasible that patients who experience occasional palpitations are more likely to avoid caffeine because of the old adages of caffeine causing palpitations. Those same people, who have now cut out caffeine, are paradoxically more likely to experience arrhythmia since they've previously shown a propensity for arrhythmia. The end result is that it appears that people who drink less caffeine get less arrhythmia.

That's why I think we'd have to be very cautious in E.g. recommending coffee for AF prevention.

Thanks.

(We really need a like button.)

Seriously, thanks for all this information guys, it really helps.

I'm pretty positive with it all, I think the frustration I have is the timeline dictated to me by the cardiology clinic, but understandable in the current environment. Not getting depressed or anything at this point, it is what it is and I will live life and deal with it.

I think alcohol may have a part to play, only because I had a few drinks the night before, so that has been stopped. Coffee I was always drinking with no flare up previously, so I may experiment with bringing back the odd one, but for sure it helps to drop the amount down, de-caff ain't so bad.

I'm planning to add some gentle turbo next week to see how it goes, the clinic suggested to get some gentle exercise in if I can.

All the best to you all.

There we go then - saw a nice, young, chatty doc this morning about my headaches. Asked about ablation and he said about the risks involved, versus the benefits to someone like me, who has AF, but can get on with life mostly as normal. As I don't really get too many side-effects and my only real downside is being less energetic than before, it's not worth it. So sticking with 27* drugs a day is best.
*(4 really)

I had an ICD fitted (Implantable Cardioverter Defibrillator) last year and have been fine since. My heart beats away at 50 bpm at rest now.

Interesting new study:

https://www.nytimes.com/2021/08/30/well/live/alcohol-atrial-fibrillation.html

A new study has found that consuming alcohol, even as little as one can of beer or one glass of wine, can quickly increase the risk of a common type of cardiac arrhythmia known as atrial fibrillation in people who have a history of the condition.

Doctors have long suspected a link between alcohol and atrial fibrillation, but until now, they did not have definitive evidence that alcohol could cause arrhythmias. The new study is among the most rigorous to date: The researchers recruited 100 people with a history of atrial fibrillation and tracked them intensely for four weeks, monitoring their alcohol intake and their cardiac rhythms in real time.

The scientists found that drinking alcohol heightened the odds that a person would have an episode of atrial fibrillation, or an abnormal heart rhythm, within the next few hours. And the more they drank, the greater their likelihood of having an arrhythmia. The new study was published on Monday in the Annals of Internal Medicine. The conclusions, along with data from previous studies, suggest that people with a history of atrial fibrillation could reduce their chances of developing arrhythmias by cutting back on alcohol or avoiding it altogether.

i think my AF started with the help of too much booze.
every september i have a week away with the lads on the bikes.
we spend all day riding and evenings drinking.
so maybe 30 or more pints in the week.
my Af started on a monday after coming home from one of these weeks away.

Just found this thread when I was looking for threads on watt bikes….wtf, literally!

I’ve just been to see a Cardiologist who specialises in heart rhythm,as I’ve got AF, which is now permanent. I’ve had a few ‘moments’ over the past few years but it really kicked off in August and righted itself, but came back two weeks ago and is still going. So I managed to get in front of a top Specialist who explained how these rogue electric pulses start firing into the heart and they don’t know why.

So I’m going to get shocked back into rhythm and have an ablation, which I really hope will get it sorted. Currently a bit light headed and feels like I’m on two thirds power.

Thought it was about time I updated this thread as some people have been asking how I'm getting on, plus Rockape above got in touch with his issue.

I have been in constant AF since it started around 2 months ago, no breaks, my heart just stays in AF all the time. They don't know the reason for why I have it, they have checked everything and I've had heart scans and all is okay, no thyroid issues, so no idea what they need to do to prevent it from happening again.
Anyway, I had my cardioversion last week and got a reset, it was a very easy procedure with no issues, basically go to sleep for 10 minutes or so and it's done, no pain nothing. Everything went back to normal...for 3 days, then Sunday night I got the heart flutters again and I've gone back into AF, very annoying. I had 2 cans of beer that evening so it looks like alcohol may be my trigger, similar to what Ton mentions above (although not the same levels 🙂 ), the hospital had told me the odd drink was okay but in my case probably not, alcohol has to go for now. So it looks like an ablation will be on the cards once they can get me in but it may be months. I'm awaiting feedback from the hospital as to what to do next.

My cycling has gone from quite active on zwift, to almost nothing, I just can't do anything without my HR going through the roof, easy recovery paced rides only on the turbo, once or twice a week. I really miss the exercise and it's affecting the mental health a bit, I'm definitely grumpier!

@oopnorth

mate, when i got to the stage before a ablation, i bought my first e bike. perfect excuse.
kept me riding with the lads.

and good look with the ablation.

@ton

You're not the first to suggest that! It's always an option 😁

@oopnorth hope you get it sorted.
For my heart issues (not AF) I went with Bupa (covered by work) which has massively sped everything up.

Any chance you can do similar?

@oopnorth

thing is mate, and i know it is harsh, ablations dont always work. mine didnt. and if i had not bought a ebike, i would have been off the bike for around 3 years........**** that.

life is for living. buy a ebike, use it until fixed then sell it on.

good luck.

@ton

How did you get it sorted in the end?

@el_boufador yes I have bupa and started the process through them with consultations etc. However the consultant told me the actual procedures needed to be done through the NHS. Maybe that's just our region but I'm going to recheck that, I don't want to be waiting if I don't need to.

@oopnorth

i went to see a specialist in sheffield. a bloke called Steven hunter.
he did a thing called a cox maze procedure on me. he had to open me up though.
but it all worked out in the end.
he is a bit of a wizard at this stuff. do a search on him.