Hi everyone, a question I've been wondering for a while - if afib episodes occur 1-3 times a year and vary in time from 60 seconds to 15 minutes, is there any need for anti-coagulation? It seems the medical fraternity differ in opinions on this question. What have others in this forum been told by the medicos?
Look forward to your replies.
Cheers, Musetta
How do you know how often your heart is fibrillating? What happens when you are asleep? The first time I saw my EP he said "I think that you are fibrillating more than you realise.". A 7 day monitor was fitted and he proved to be correct. There was a 36 hr episode which did not match my diary record.
Better safe than sorry, if you have AF then you almost certainly need anticoagulation. Last week I saw my EP and he confirmed that my ablation was deemed a success and he wants me to stay on Pradaxa for life.
Hi Musetta
Well I'm not medically trained, but I suspect that you saying that AF episodes occur 1 - 3 times a year is probably only the episodes that you feel, not the ones that you don't feel, and I am an example of that being in persistent AF with almost no symptoms.
For me, and this is a personal opinion, it's too serious a risk for me to want to do anything but be anti-coagulated. As Bob will say you can always stop taking tablets but you can't undo a stroke.
Again for me, and for the great majority of people, anti-coagulation is just a habitual tablet to take, with virtually no side effects, and with no drama or difficulty. Of course some people get side effects, but they are a small minority, and of course some people will suffer serious bleeds but they too are a small minority, roughly 0.2% to 0.5% of those who are anti-coagulated.
I just look at the figures that tell me 20% of the most serious strokes are AF related, these are the strokes that kill or vegetate you. 152,000 people per year suffer strokes in the UK according to the Stroke Association (State of the Nation January 2015), 1 in 8 are almost immediately fatal (19,000) and 1 in 4 of which are fatal within 12 months (38,000). Of those who survive stroke, 3 in 10 will have another stroke.
I can only relate my experiences, I score zero on the CHADS2vasc, my doctor/specialist said it's your choice.
I anti-coagulate.
Wish you all the best
Ian
Slight correction to data Ian, I think 20% of ALL strokes are AF related of which 80% are the most serious and unrecoverable. We could save 8000 strokes a year if all those at risk patients were on anticoagulation. Britain has the second worst record in Europe for getting at risk patients onto anticoagulation.
There are of course, lies, damned lies and statistics.
Bob
Hi Bob, I am a sinner (ie CHADS 0 and not on anti-coags). I just wondered if you had spotted the stat of how many on AF medication, but not anti coags, suffer strokes per year.
Terrifying stats, Ian. I'm with you on that. Anti-coagulating for life. No way is it worth the risk
There is also an elevated risk of brain haemorrhage if you use some types of anti-coagulants, so this is a consideration.
Hi Mussetta, There are many people including a great many EPs who feel that if you have AF then you should be on anticoagulation regardless of CHADSVASC score, frequency or intensity of any events, age or any other things. The current guidelines use CHADSVASC as a score system but do not take into consideration how often etc. The point is that many people are asymptomatic and have no knowledge of when or if they are having events. A great number of stroke victims didn't know they even had AF till the stroke!
A wise man once told me "you can always stop taking anticoagulation but you can't undo a stroke". My own personal opinion is that playing Russian Roulette with AF is stupid. This also applies if you have a successful ablation as changes in the atria brought on by the fibrillation can still result in clots being allowed to form. MY EP told me I could stop warfarin but I didn't and never will unless my HASBLED score overtakes my CHADS.
Bob
You can definitely have aFib without feeling it even if you're normally symptomatic, at least I have. I saw the chaos on a monitor in hospital and couldn't feel a thing. I asked to be discharged because I felt fine, but quickly changed my mind when I saw the monitor 
My sister has afib and unlike me is very asymtomatic and has been for over ten years. Her EP never put her on anticoagulant until this year when she changed EPs FINALLY! Can you believe that thinking!? Scary.
Hi Musseta, your question asked what had the medicos told us re anticoagulation as you believe medical opinion to be split:-
when I was first diagnosed back in 2007 I was advised to take asprin (which we know now to be completely ineffective). But the relationship between AF and stroke was only just being recognised and it was not known that asprin was completely ineffective and that Anticoagulation was effective against AF induced strokes.
Difficulty is that many medics are not fully informed on latest thinking and that there is a heavy emphasis on patient consent, meaning that any doctor will explain and leave the choice to you.
So my recommendation would be for you to research for yourself and listen to your EP and make your own mind up.
Although I really didn't want to take ac I did, because as Bob says you would be a fool to risk a stroke that you cannot undo.
After a successful ablation I stopped taking all heart meds including ac but that was because I had to take some pretty heavy meds for another chronic condition, however I have been advised to go back on them in a year or so, even though I havent a trace of AF now.
If I had a trace of even a few seconds, I would be back on them.
Our medical lead for our support group said 6 minutes of AF has been enough for a clot to form-
Personally, in 15 years of diagnosis of AF, and many hospital and doctor visits, I have never met a doctor, consultant, EP, health worker, nurse etc who suggested anti coagulation was not necessary, regardless of what episodes when etc... I don't know where that info comes from.
Stay with the the anticoag...
Phil
Phil, I see an EP and he tells me I don't need ac.
I had one 90 min episode of AF in 2012 which began my visits to the EP at Harefield. Since then anything I have is very short lived, a few seconds only. I've asked my EP several times about ac and he says he doesn't want me on them.
I also ran this past an EP at AFA patients day and he said he wouldn't put me on them either.
I do worry a bit with all the warfarin lobbying on this site but all I can do is trust my EP.
Pat
I see your point. Sorry that your posting has opened up a set of other postings on a thorny subject. I hope all the postings here are not worrying you. (although I think they must give you food for thought). I suppose if the EP says so it must be right. Maybe.
Be well.
Phil
It's what we have to do though, Phil. AF is sadly serious and by discussing 'thorny' subjects, we're almost certainly saving lives. Ian & Bobs stats scared the life out of me but without that info I wouldn't have known the seriousness of our consequences of stroke, so whilst frightening, thanks guys!
Nige
Perhaps there is a specific medical reason(s) why you shouldn't be on anticoagulants ftp that you or your EP are not disclosing. Have you asked why your EP "doesn't want (me) on them"?
I am in the same position as you. Scary isn't it?
It is Lauren. Scary not to take them and at the same time scared to take them. : /
Pat.
When I had my first episodes, Pat, I was with you on this. You're only really at risk when in AF so as soon as it starts, off to hospital to sort, including the blood thinning injection.
Not anymore though. The longest I've stayed in Sinus since last September is 6 weeks 5 days and my hearts tried hard to get out of rhythm between those time frames as well.
Started anti-coagulating after my second DC Cardioversion in January and am sticking with it. I'm just not prepared to play Russian Roulette anymore and what held me back originally was the fact that I'm only 48.
Sadly, Bobs right. AF begets AF so if you get anymore episodes, get on the meds. Meanwhile check your pulse regularly as this is a killer if silent.
I've got an Alivecor so I'm always aware of my rate and rhythm.
I have no medical reason to not be on ACs. No other conditions and on no meds.
I've had all the tests, 24/48 HR holters, echoes, stress tests, and an MRI.
It's Just me, with a structurally normal heart and years of ectopics with one known episode of AF.
Anyway I'm seeing my EP on March 5th and will ask him about them again and report back.
Pat
The pill in pocket method has worked for me. Stops AF within about 60 to 90 minutes.
This all seems very scary for me. My consultant said I didnt need to go on ac's, but when I did the risk questionnaire on the AFA website, I was 5 times more likely to have a stroke being a woman and having recently diagnosed AF. From what I'm reading here, patients need to call the shots. Getting through the system is not that easy, when doctors seem not bothered. Lack of local facilities is also a problem.
Genorm,
Here's what I've done, and carry with me 24/7.
I have a diary of every AF event. Date, HR, meds, treatment, the lot. If you're unfortunate to have another attack, get to hospital and show it to the docs. They absolutely LOVE having the info. I've even got a few ECG's I was given, (unofficially cos they probably shouldn't, lol), and two doctors have found these invaluable. If you're in AF and don't feel comfortable with your treatment, ask to be transferred. I'm very fortunate as the 3 hospitals who have treated me have been brilliant.
Good luck 
Nige
Musetta.....read my post "Warning....etc"..........just posted 2 minutes ago!
When I was visited by my E.P. in hospital after ablation he told me I was very unusual because I had had 3 T.I.A.s previous to being on warfarin and he said that because of my age,good general health e.t.c. warfarin wouldn't have been recommended. I wasn't with this E.P. when I had the T.I.A.s but he clearly wouldn't have prescribed it either. However there are a considerable number of people on this forum who were the same as me and like me did have T.I.A.s .
I must say that it gave me a lot of confidence when I had the T.O.E. prior to ablation to realise that warfarin must have been doing its job.
If I couldn't get a doctor to prescribe it for me I too would be looking at natural remedies. X
I visited my cousin last week. 6 years ago he had an AF related stroke (he did not know he had AF before this) He was rushed to hospital 10 minutes away by his daughter who is an A&E doctor so she knew immediately what to do and rang ahead to say she was bringing him straight in and what she needed doing on arrival. Everything was in place and he could not have had quicker or more capable intervention.
However he is badly disabled by the stroke and has carers three times a day. A salutary tale. Take an anticoagulant or risk the consequences I say. No contest for me I take one and have done for the past two years.
Incidentally I have to come off mine and other AF meds today ready for an ablation I am worried to death about stopping the anticoagulant even for a few days.
Following my three monthly post Ablation review my EP recommendation to my GP was as follows...
"As you know she has a structurally normal heart and her CHADs score is zero (CHADSsVASc of 2 because of age and sex).We have agreed to revisit this issue in 3 months time.If she continues to remain AF free then l feel that the risk of warfarin would outweigh the benefits and l would be happy to recommend that she come off warfarin at that stage"
I am still very undecided...
Carol....
Hi, I have moaned on here many times that I take a serious drug Warfarin for something that doesn't happen often. Today I moaned to a friend who is a nurse specialist in cardiology who told me that she wasn't trying to frighten me but people with paroxysmal AF need anti- coagulation just as much as someone having many episodes. She explained the reasons can't quote exactly so won't try as I might get it wrong but I will say she convinced me, so I will now stop moaning and just try to get on with it.
I think that those people who have AF that affects them quite significantly find it easier to accept all the difficulties it generates that those of us who don't have it often and are not bothered much when it does happen. It is difficult to accept that something seemingly relatively insignificant should be as life changing as it is. Stop moaning and just try to get on with it .... not as easy as I would wish.
Figures for our area (Surrey ) re stroke and AF show a high number of strokes are AF related. I was at a stroke prevention meeting ( invited by our CCG) and one stroke consultant said that 9 out of 10 recent deaths from stroke at his hospital were patients with AF so we really have to take it seriously
Yes yes and yes. Read earlier post about the person who suffered a stroke even with a CHADS score of nil.
You only need one to have a stroke?
No one likes taking meds and I was the worst at forgetting them before last September. I hope this doesn't offend anyone and if it does, sincere apoligies, but as far as I'm concerned, it's a really easy decision.
Do you suffer from AF?
If yes, do you want to live?
Anti-coagulate !!!
Stay safe everyone. This forum is awesome.
Thanks
Nigel
Oops, typo
As stated above, one cardiologist told me that anyone with AF, regardless of how infrequently it occurs, falls into an elevated risk category for strokes. They then have to perform the CHAD analysis to determine whether anti-coagulation therapy is recommended.
I think you have to consult one or more cardiologists and draw your own conclusion.
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