I realise my query is minority interest, but any feedback thankfully received.
I have lone AF, soon to be prescribed Flecainide + beta blocker, both as PIPs if needed. So far, very predictable.
However I also have an appt looming with an Anticoagulation Team. And here's the rub. I have genuine medical concerns about anticoagulation after suffering unexplained bilateral acute subdural haematomas in late 2016. My inclination is to decide against anticoagulation when the question is finally asked of me, but I am very aware of the seriousness of this choice.
However, after reading previous contributions by Forum members I remember reading that some were using their anticoagulation as a PIP (yes, as a PIP!) starting anticoagulation only when AF starts and continuing for a specific period after the AF ended, I'm wondering if this THIRD choice is also available to me.
Not ALL anticoagulation, or NO anticoagulation, but anticoagulation only during and a short while after an AF event?
So I would be pleased to receive feedback from Forum members who do actually employ their anticoagulation in this way as a PIP, or have written about this in the past. Both positive and negative experience welcome. Was this practice authorised by an EP/Cardiologist? or a personal choice?
Also I would appreciate feedback about any research that applies to this use of anticoagulation as a PIP.
And of course others who have genuine reason to think my query is wrong-headed and "bonkers" .
Bob.
Written by
ozziebob
To view profiles and participate in discussions please or .
No I don’t think your query bonkers at all. I am due a review of my medication as I’m almost 3 months post ablation and that is going to be one of my questions also. I’m a cyclist and I’m very concerned that should I have an accident… especially a knock on the head from a fall I could end up with a serious bleed. I recently cut my finger recently and it took ages for the bleeding to stop. I understand the need for anticoagulants but surely it is only essential when in AFib… which hopefully will be very infrequent!
Thomas29, Thanks for your contribution. BobD's point below about asymptomatic AF events we suffer, but are unaware of, is a good one for both of us and needs further investigation. But I don't think the research has been done yet.
Re those Forum members who currently practice this THIRD way, I'm wondering if they might keep their heads down, rather than exposing themselves to criticism for this "unauthorised" practice.
I can only hope those who have mentioned this practice previously on the Forum will see my Post and contribute their experience.
I had a TIA before being on Apixaban 6 months after my previous afib episode . It is possible that I might have had a TIA without being a fibber but who knows? Are you certain you are not having episodes when you are asleep? I have some episodes that start when I am asleep but I am pretty sure they wake me up almost immediately. But some people have short episodes that start and stop when they are asleep and they are not aware of them. As for " unauthorised " practices I will admit to one. I cannot take the full dose of Apixaban - it gives me terrible backache and makes my joint pain worse. So I take a half dose, along with a small dose of nattokinase and some other supplements that have minor, " blood thinning " affects like NAC and fish oil. When an afib attack strikes I up the Apixaban to full dose and stop the nattokinase till I can't stand the backpain any longer.
Not something many doctors would recommend. The problem is that many people have asymptomatic events often whilst sleeping. Same thing applies post ablation as there is no evidence that even successful ablation removes stroke risk. As has been pointed out many times it is not the AF but the company it keeps.
After 18 years on warfarin building and testing race engines I have yet to injure myself more that a simple plaster will treat.
BobD, Thanks for your thoughts. I will keep them in mind as I go forward.
The issue for me though, from my experience, is that I could well have a congenital weakness re brain bleeds, and a consequential high probability of a repeat bleed event, which pushes me to NO anticoagulation at all. So a THIRD way would at least give me anticoagulation some of the time.
Not the "perfect" solution of daily anticoagulation you usually recommend, but let's not allow the perfect be the enemy of "what is possible" for me.
I obviously will discuss it all with the Anticoagulation Team when I am called.
I have had 2 very bad falls (3 actually) and the first and second time I crashed my head very very hard and caused a subarachnoid haemorrhage. I had to go to hospital and because I was on apixaban anticoagulant I was given the reversal drug (3 phials) via cannula.
I was going to be sent to St. George’s for the operation but because I had had brain tumour surgery they deemed more risky going in again so I had to wait for 3 weeks to start taking my apixaban. It was thought that it might take 6 weeks before the bleed would heal.
So my point is despite the bleed it was thought it better to resume the anticoagulant for my atrial fibrillation. I too am on bisoprolol and flecainide because although you may only feel your afib occasionally sometimes it can be going on without you knowing
Thanks Pat for your contribution. The link to the research done on anticoagulation PIPs provided by mJames1 is definitely worth reading. Here it is ...
Re brain bleeds, which I am personally concerned about in relation to anticoagulation, I was drawn to the following paragraph, in particular the final sentence ...
"The 59-patient REACT.COM study, for example, evaluated tailored anticoagulation with a NOAC guided by continuous monitoring with an previously implanted insertable cardiac monitor. Anticoagulation was used for 30 days after any A-fib episode lasting for an hour or more. The total time on a NOAC was reduced by 94% compared with how long patients would have been treated if they were on chronic anticoagulation. No patients had a stroke, but there was one TIA that was not preceded by A-fib at any time in the year leading up to the event. There were two major bleeds in patients not taking NOACs that likely would have been fatal had they occurred on the background of anticoagulation, Passman said."
10gingercats,Yes, however my feelings if I was anticoagulated daily would be exactly the opposite to yours. Strange but true. I'll see what the AT (Anticoagulation Team) say.
Bob
This was raised as a topic about a year ago and it did attract some interesting comments. Some were suggesting that with the increasing use of more accurate monitoring devices they felt it should be possible to use the monitor twice a day and provided there was no evidence of AF, it was not necessary to take an anticoagulant. A few members quoted from trials that were carried out in America fairly soon after DOACs were first introduced and from memory, not one actually suggested that taking an anticoagulant as a PIP was a sensible alternative to the instructions issued by the manufacturers. In the UK, NICE guidance on taking anticoagulants is clear, and ironically, this evening my surgery sent me a link reminding me of the instructions for taking an anticoagulant.
Apart from when taking an anticoagulant for a short period as a precaution before and after an ablation, almost all EP’s recommend that patients who are prescribed regular doses should continue to take their anticoagulant even if they believe the ablation has been successful for the reasons outlined by BobD
If someone has or is trying what you refer to as the third way and so far they have been lucky, then maybe you will hear from them. Remember however, if they have sadly been unlucky, then the chances are you won’t. How you make a judgement based on that logic is, of course up to you. All I can say is that whenever the question of taking an anticoagulant as a PiP has been raised at meetings with EP’s here in the UK, it has resulted in much the same response……
FlapJack, Thanks for your helpful reply. Your experience is welcome.
I will try to use the Search facility to find relevant past Posts, but my previous experience using the Search option is not promising. If you have any links to these previous Posts, I would be very grateful.
Re those not taking anticoagulation or employing the THIRD way who disappear from the Forum because they unfortunately suffer strokes, that would also surely apply to those taking daily anticoagulation who suffer strokes.
Not sure I understand the logic of that argument Bob, no medications come with guarantees but if someone chooses not to take them when advised to then they have just have to accept the outcome of their decision. Sorry, but I cannot recall details of previous posts.
Yes, I'm still in the situation that with my brain haematoma history, and with only my age making up my chadsvasc score, I'm not yet in the position you described of being advised to take anticoagulation and rejecting this advice. In fact I suspect/hope I might never get such advice. So then it really will be my decision. Bob
Yes, I have used AC's as a PIP and yes, it's as bit controversial. My current ep is onboard with this strategy, some ep's I've spoken to are not. There was one or two studies that support PIP ACs, albeit quite small.
First decision is do you even need AC's in the first place? That is a decision between you and your doctor based on your CHADS2Vasc score and any other medical/lifestyle issues you want to factor in. I was involved in motor sports with a CHADS2 score of 2 and was concerned about the risk of an accident. My cardiologist at the time put up on a chalk board my risk of stroke with and without AC's. Yes, the risk was higher without AC's but the overall risk was quite low. We decided together I would not take AC's. Later, when my episodes became very frequent, I started on daily AC's.
Now that I'm on daily Flecainide, my episodes are very infrequent, very short and I always know when I'm in afib, both due to experience and my Kardia and Apple Watch. So now, I'm back to AC as PIP. That could change if circumstances change.
Don't let anyone tell you that AC's are non-negotiable like one ep told me. If a medical decision is not a shared one, it's a bad decision, because it doesn't take into consideration the patient as a human being as opposed to a statistic.
Do your own research, find a good and knowledgeable doctor who believes in shared medical decision making and come up with the right decision for yourself.
Jim, Thank you for your helpful and insightful reply. My thinking seems very similar to yours, and it's good to hear the actual experience of others re anticoagulation as a PIP. And your EP being on board is just the feedback I need going forward.
BobD raised an interesting point earlier about asymptomatic AF events occurring during sleep, and at other times, of which the sufferer is unaware, indicating that this as an extra reason for permanent daily anticoagulation. I'm not sure how I would ever be able to include the unknown probability of these events into my final decision.
But thanks again for your contribution. It will allow me to feel a bit more confident when I meet the Anticoagulation Team.
PS. Do you have any links to those small studies on PIP AC's you mentioned?
Hi Bob - do you have any way of monitoring your AFib, ie an Apple watch or Kardia? That would be very helpful for you to have a better idea of what's going on 24 hrs a day. For me, at least currently, I'm lucky in that my AFib is symptomic and I can always tell when it's started up, but I also rely on my Apple watch and also, now a Kardia 6L, to track the episode for me. I wear my watch through the night and it does notifiy me of low heart rate, for example. I've never had an AFib episode start during the night, but if it did the watch would register it.
Hi Helen, You say your watch would "alert" you of a low HR at night, but does it also "alert" you if you are in AF at night? And does this "alert" wake you up at night so you could start PIP anticoagulation without any delay?
I'm also aware of my AF when it arrives during the day, but the one nightime occurrence I know about was detected by the usual overly frequent toilet visits.
I've had a Kardia 6L for 10 weeks or so now, but already lost Kardia Support because my phone isn't on their list. Still it seems to work. I used it at 3-45am about a month ago with my last AF event, that nightime one. So I would have been able to start anticoagulation pretty quickly if I was using a PIP approach.
And I have never joined the Apple club, so no access to their fitness tracking.
Hi Bob - sorry for the semantics but I didn't say the Apple watch "alerts" me at night, I have a nighttime setting so I don't get any alerts during the hours I've set as nighttime - it tells me about the low heart rate when I wake up. I've set it up like that as I have low HR every night and certainly don't want to be woken up to be told that! What I meant to say, but wasn't clear enough, is that if I was having episodes of AFib starting in the night I would know it (on hindsight) but that hasn't happened yet (fingers crossed). At the end of the day, I'm making my own choices and accepting the risk so I would have to take the anticoagulant when I woke up and hope for the best. I don't know that anything short of a siren going off would wake me anyway - I sleep like a stone until the early hours of the morning.
If you don't have an iPhone then that's no use to you anyway. Good that you have the Kardia but since you have had an episode at night it would be helpful to have something that would wake you, if such a thing existed!
As I said, my extra frequent need to urinate certainly wakes me pretty damn quick when AF starts in the night. And more timely than your "notification" on your Apple watch it seems. Re my repeated use of "alert", I had mis-remembered the word you used was "notify". And the extra emergency involved in the word "alert" led me to wrongly think it would wake you up. But you answered my question anyway. Thanks.
PS. I'm rather late getting to these Replies, apologies for that. I'm getting through them as best I can.
You're doing fine (on the replies front). But just as an aside, I haven't experienced the 'increased urination' effect yet with any of my episodes, though I've read that it's common. I guess your body has built in its own alarm system!
Your body knows better than to interrupt your dreaming mind and all that imaginary bouncing up and down and sideways on your imaginary trampoline !!!!!
Oh yes, the urination thing re AF might just be a night-time thing. It must be to do with different speeds of production of urine when awake v asleep. Plus the extra with AF. I'm not really explaining it, we need to ask an expert (or not, perhaps Google).
You said: "Don't let anyone tell you that AC's are non-negotiable like one ep told me. If a medical decision is not a shared one, it's a bad decision, because it doesn't take into consideration the patient as a human being as opposed to a statistic."
Amen to that!
Having read the article above I am struck by the point of view expressed that is against a PiP approach - namely that patients woudn't be compliant with the self monitoring required by this approach. This seems to indicate that many people don't take an active approach to their health or medical conditions which surprises me but presumably is what these doctors have experienced. I'd say, though, that in my experience doctors in the UK certainly seem to have a very 'paternalistic' attitude (regardless of the doctors gender) and actively discourage any attempts on the patients part to be informed and take an active role in their own treatment.
This could only possibly work as the subject is always aware that he is in AF. I am as often as not unaware that I am suffering from AF, usually it is breathlessness and feeling 'ill' that makes me aware of it and I can confirm it with pulse rate and so on. I am told I am in permanent fibrillation but mostly it is controlled well with beta blockers.
So anybody (and it's probably most people) who is unaware of being in AF would not take the anticoagulant as a PIP until it is probably too late.
I write as someone who had a stroke just two years ago and at the time I was not aware I was in AF, which was diagnosed as the principal cause.
Sorry to hear about your stroke. Fortunately I'm not taking any heart-bending medications so far, and feel I can sense when AF starts. There might be a short delay, but I'm sure I would start AC PIP pretty quickly. And it takes a few hours to become effective anyway. The whole area needs more research, as it seems full of controversial "wisdoms". I'm sure in 10 years time PIPs will be much more accurately prescribed with better self-monitoring devices, and anticoagulation limited appropriately to only those periods of genuine patient risk.
Obviously check with your doctor, Bob, but no anticoagulant works that quickly, not even Apixaban and the other modern ones that modify platelets. According to Dr Gupta of York Cardiology who has a lot of stuff on Youtube, if AF causes blood clot formation in the atrium (there's a little 'cavity' besides the atrium, a bit like an 'appendix') it can happen in a minute or two, so my personal view would be it must generally be better to opt for anticoagulants if you are in a risk category. You really do NOT want to risk a stroke, believe me! 🦊 Sorry if I sound dogmatic, but you get to see things rather black and white once something has happened to you! Listen to what everybody else says of course.
But "something" has happened to me. I have suffered unexplained acute bilateral subdural haematomas, which if they had occurred under anticoagulation, the outcome would not have been so positive. So obviously my black and white is different to yours. Can I refer you to the article mentioned by mJames1 in his Reply ...
... from which I have taken the following quote. Please notice the final sentence which is particularly related to my situation ...
"The 59-patient REACT.COM study, for example, evaluated tailored anticoagulation with a NOAC guided by continuous monitoring with an previously implanted insertable cardiac monitor. Anticoagulation was used for 30 days after any A-fib episode lasting for an hour or more. The total time on a NOAC was reduced by 94% compared with how long patients would have been treated if they were on chronic anticoagulation. No patients had a stroke, but there was one TIA that was not preceded by A-fib at any time in the year leading up to the event. There were two major bleeds in patients not taking NOACs that likely would have been fatal had they occurred on the background of anticoagulation, Passman said."
Sorry I didn't quite comprehend your full situation. Obviously the cause of the acute haematomas needs to be understood and explained beyond all possible doubt. It must be very concerning when they are simply 'unexplained'. As you say, any chronic or even acute treatment under anticoagulants could have alarming consequences and I fully understand now why the AF is going to be seen as the lesser evil in your circumstances. Thank you for explaining and good luck in finding a solution.
Thanks for comeback. None of the neurologists I later saw as an outpatient follow-up could give any definitive "cause", so I don't think your being "understood and explained beyond all possible doubt" will ever occur. One suggestion was "straining" on the toilet, but that means "we are all doomed", as Private Frazer was fond of reminding us. Unless I can find a way to avoid the toilet completely.
One thought is that I might just have a congenital weakness in my brain arteries, and with major bleeds on AC's likely to be deadly, even mini bleeds on AC's has been linked with early dementia.
Such is life. What a journey eh! And a wonderful mystery!
Many years ago when I was getting bouts of afib I would go straight to A+E so I could get it caught on the ECG to prove to my doctor that i thought I had AFIB, but every time I got there I would go back to normal rhythm, But one day they did successfully catch it and at last I was finally diagnosed with AFIB.
I remember telling the hospital cardiologist that every time I was having bouts of AFIB I would take ASPIRIN for a couple of days to lower my stroke risk, and he said that’s very sensible and a good idea.
So he must of thought it was beneficial for me to it or he would have said stop.?
He then went on to tell me that from now on you will take warfarin daily until you get to see a EP. I did eventually see a EP over the next few years and underwent 3 pvi ablations.
Aspirin really does NOT significantly reduce the chance of stroke. I took it regularly for nearly 30 years and I still had a stroke while on it caused by AFIB. The doctors all asked me why on earth I was not at Apixaban before it happened.... all except my 'medecin traitant' who was eager to avoid the subject!
Yes that’s correct but I hadn’t been diagnosed with Afib by the doctors although I knew I had it. So until it was finally caught by ECG I thought aspirin is better than nothing.? Soon as I was diagnosed with AFIB it was then I got my warfarin.👍
I might be going mad, but did you ask this question a couple of months ago?I guess you would need to weigh up the stroke/bleed risk but that really needs to be a decision you make on medical advice, fabulous though this forum is.
As Bob pointed out, there can be episodes you are not aware of, ie during sleep but, even if you start having an episode of AF you are aware of, has the potential damage for stroke been done whilst you are waiting for the anticoagulant to kick in? Just something else to consider.😊
Re your going mad ... I suppose you would be the last to know ... you would need to ask a friend about that. I did raise a question about anticoagulation a short while back, but this Post was specifically about ACs as a PIP, a different matter.
Reading the link article posted by mJames1 perhaps we are still awaiting more refined self- monitoring devices that will alert the patient immediately an event begins day or night, although, as you say, there will always be a delay before the anticoagulant starts to work.
But for someone like me, a THIRD way is definitely preferable to ALL or NOTHING !!!!!
Ah. sorry, it obviously rang the wrong bell in my head. Thought I recognised the name as I've got relatives in OZ. Difficult choice but I suppose its still worth checking how long an anticoagulant takes to kick into action when you take it. Best of luck.
Someone here posted it took several hours to "kick in", but that must be different with different anticoagulants. I will pursue further. As for OZ relatives, me too, because I'm Australian, but residing in UK.
6. Response and effectiveness (of Eliquis/Apixaban)
Peak concentrations of Eliquis appear within 3 to 4 hours of an oral dose. Absorption is not affected by food or by crushing the tablets but the rate of absorption is reduced at higher dosages.
The effect on blood clotting factors happens within a few hours of taking a single dose of Eliquis. When Eliquis is stopped, its effect on clotting begins to wear off within 24 hours.
What difficult decision you’re having to make and as subdural haematomas are caused by a bleed I feel for you having to make them. The anticoagulant issue will leave you feeling damned if you do and dammed if you don’t. I don’t know what I’d do in your position. Balancing the risks of a stroke caused by a bleed against the risks of a stroke caused by a clot in your case won’t be straight forward. The anticoagulation team is a good place for advice though and I’d have to really look into things. Good luck
I had similar concerns regarding the effect of ACs on the rest of my body. My cardiologist was professionally bound to recommend I take them daily but he accepted my PIP choice (as I am borderline according to European guidelines with a CHADS score of 1) and gave me a scrip for Edoxaban. In my individual case, as only 2 episodes under 2 hrs in 8 years and with some bleeding concerns, I am happy with my PIP decision to be reviewed at 70yo.
Assuming you are psymtomatic, have no other issues contributing to a possible stroke and do not have regular episodes (ie more than one every 3 months, what I have read here and heard elsewhere is that you should start taking ACs once an episode lasts anything from 2hrs to 2 days; personally I think I would start after 4hrs if I had another episode as I also have Factor V Leiden heterogenous.
ACs cut the stroke risk by around two thirds according to some research.
Nothing certain or scientific so I read and follow gut feel, welcome to the nebulous world of risk reduction where no one can be proved right or wrong as the alternative result to any decision is not available!
I accept I am in the minority and have no reliable data to back my viewpoint but draw some comfort from the apparent large percentage of people with undiagnosed asypmtomatic AF, who are not dropping like flies in the street and the fact that the medics will always advise on the cautious side for professional indemnity reasons.
Thanks for your considered reply.I have had 9 events in 20 months now, mostly under 4-5 hours, but 2 of 12 hours duration. The only factor in my risk calculation, I think, is my age 75, countered by my brain bleed. It's the "acute" in my diagnosis that suggests to me long lasting small bleeds, not something you want when anticoagulated, and living on my own to boot.
I'm optimistic from your experience and others, especially that not all "experts" are against the PIP approach re anticoagulation, that I might not even be "advised" to anticoagulate. And with the help of the Forum contributions I will be much better prepared when the "hard" questions get asked at my Anticoagulation appointment.
Hi ozziebob, I made mention a month or so ago that this was my strategy, based on having three or so short-duration episodes a month. I’m taking three doses of propafenone daily to achieve that. My cardiologist was in agreement in the approach, as my chads score could be rated a 1 or 2, depending on how the mild arterial stenosis was categorized (ie is it “heart disease” or not….I’m in the middle of the pack when age-adjusted).So if an episode goes over 4 hours, which is rare, I take a dose. Perhaps the proper logic is to take the dose as soon as it starts. That would be 3 doses a month, currently. Need to think about that, but the cardio felt the 4 hour point was reasonable.
If AF over 4 hours, you take a dose of what exactly? I presume you mean an anticoagulant. Which one? But your experience with your Cardio is very helpful. Thanks.
Sorry for being too brief. My cardio gave me a prescription for rivaroxiban, and I take a 15mg dose. I’ve only had to do it twice in the past 3 months.
Hi Bob, no, I haven’t lived in the UK for a long time. I’m a US guy currently camped out in Shenzhen China. Hope you figure out a good solution for yourself. I think we’re all leary of having to take so many medications. Hard to balance the risk in a quantitative way. But there’s something to be said for better safe than sorry. That’s primarily why I decided I wanted the safety net if/when my afib doesn’t settle down quickly. BR John
As well as the CHADSVASC score there is also the HAS -BLED score for bleeding risk which I imagine would be calculated for you given your medical history. This might well rule out an anticoagulant altogether. In this is the case you could ask about PIP but there is always the possibility that this would be considered too dangerous from a bleeding perspective.
Thanks. I do like your understanding as expressed in your Replies to Forum members. Long may it last !!!!! I had also considered that even as a PIP, an AC might be considered too dangerous for me, but I appreciate you reminding me. That's when you get the rock and the hard place.
But I realise my situation is as nothing compared to the medical dilemmas of others here on the Forum. I wish the best for all.
I hope you saw the research article linked to by mJames1. As I said, well worth a look ...
I will requote for you the following paragraph from this article, in which the last sentence obviously drew my attention ...
"The 59-patient REACT.COM study, for example, evaluated tailored anticoagulation with a NOAC guided by continuous monitoring with an previously implanted insertable cardiac monitor. Anticoagulation was used for 30 days after any A-fib episode lasting for an hour or more. The total time on a NOAC was reduced by 94% compared with how long patients would have been treated if they were on chronic anticoagulation. No patients had a stroke, but there was one TIA that was not preceded by A-fib at any time in the year leading up to the event. There were two major bleeds in patients not taking NOACs that likely would have been fatal had they occurred on the background of anticoagulation, Passman said."
Yes unfortunately are between a rock and a hard place. I think PIP anticoagulation could only be considered for those who had infrequent afib attacks. I used to be among them but over the last 2 years my episodes have become more frequent. I'm blaming the pandemic!
I saw an Auckland Cardiac Spec near my home town up Far North.
The point is the unpredictable of your AF. PIP is seruously lacking as a stroke happens ina moment and at 2am in the morning. Woke me up and my head was very sore. I'm usually one who doesn't get headaches.
The stroke was caused by worrying. and AF. 4 days and a carotid scan which was clear but "2 for the price of 1" "oops there is a shadow on your thyroid".
There's your answer.
Also what is your AF caused by .. thyroid problem, hidden or known.
My H/R goes down to 47 and it has always been low blood pressure at sleep.
Now I am finally controlled with CCB Calcium Channel Blocker a.m and BB pm.
But specialist says no ablastion, enlarged heart .. soft systolic heart murmur and I will need to take anti-coagulants for the rest of my life.
Also I will probably have AF for the rest of my life.
I chose PRADAXA 110mg twice a day because it is reversible and i the cheapest regime if you overdose or have an accident. I liked that but I am taking other meds in a.m and pm.
You are put on the anti-co-agulant because your CHAD reading is higher than 1. Mine is 4 because I have had a stroke.
Pradaxa gives me a hard little rash but not itchy, feel it yes but cant see it.
I guess the ? is are you happy to RISK a stroke.
Haemotomas are common as after a hysterectomy bikini line I had a wide band black of them around my body. Showing my husband he laughed. He has passed this world.
I declined RAI Radi Active Iodine and Suppression - the surgeon told the triage of Drs that he would respect my wishes.
But I was reminded to make sure I took PRADAXA twice a day more than once.
Come in New Zealand, Thanks for your reply, I appreciate the time you have taken to communicate from the "Far North" of NZ. Does the term the "Far North" have cultural implications in NZ minds?
In Australia we call north QLD the "deep north", for reasons similar to the description of the "deep south" in USA. In both these last 2 examples it's a move to a hotter and more extreme social and physical environment.
Re my Post, because of my situation medically re brain bleeds, I might never be advised to take ACs.
The link between strokes and AF is still controversial with much more research needed, but I know we don't have time on our side regarding that. From the Replies I have received here, it seems that with future development of better self-monitoring devices, using a PIP approach to anticoagulation could be more and more popular. Please read the article given in the link provided by mJames1 in this Post.
Your case is a tough one for medical professionals to deal with. Nobody has a satisfying answer. No anticoagulants you are risking an ischemic stroke, with anticoagulants even for a short period as PIP , you are risking an hemorrhagic stroke. It is a catch 22. Another option is to have the left atrial appendage clamped and still before and after the mini maze you still have to take anticoagulants for a while . Another option is the watchman device and still here you take anti platelets drugs for life and it represents same hemorrhagic brain risks . It is your body and your choice. I took care of my dad as caregiver, who got a stroke because of Afib and was bedridden for 9 years, I can tell you it was not fun for him to stay in the bed for nine years and depended on me for everything. And evidently it is not fun for me either. Your body and your choice.
SeanJax, Thanks for your sensitive and perceptive Reply.
Are you medically trained? or is it your long years of experience of AF and strokes as a caregiver that gives you your understanding in this matter?
Re your father, you say his stroke was "caused" by AF? But is it possible to say that these events might have been synchronous but not causal in this particular instance? It is still an area of confusion in my mind, and for others better informed than me.
Just a further note. I have been reminded by others here that for medical reasons I may not be recommended anticoagulants at all, not even as a PIP !!!!! I was thinking of the PIP as a satisfactory THIRD way (vs. ALL or NOTHING), but perhaps that option might not exist at all for reasons I hadn't given enough weight.
I have read that strokes from Afib do not occur when you are in Afib but they still occur more often with people with Afib. See Youtube videos Dr. Sanjay Gupta
Thanks for your Reply. Yes, I have watched a Gupta video "Who's the Daddy?" that discusses the relationship or not between AF and strokes. He's a very helpful guide, but not sure how I can use such information if I've got no choice other than to avoid anticoagulation, even as a PIP. But I haven't yet talked with the Anticoagulation Team, so haven't reached that point yet. Bob
A few years ago, an EP had me on eliquis as a PIP, with instructions to take it if I I was in afib at bedtime. I was surprised at that, but went with it. Eventually I hit the age where it was recommended that I take it all the time and I’d also parted ways with that dr (Somewhat acrimoniously!) Current EP is much more cautious, I make sure I don’t miss doses. I actually had a very teeny tiny TIA about 18 months ago, I credit the eliquis for keeping it teeny tiny! Like you, I worry about about bleeding. But you’re situation does so7nd challenging. Hope you can have a frank discussion with your doctor about the pros and cons.
Thanks for sharing your experience. For me in UK anticoagulation is discussed with a hospital's Anticoagulation Team, whatever that is. In my understanding GPs cannot prescribe such drugs, or at least not without referring to the Anticoagulation experts. GP's in UK are now not easily available for discussing anything at all. Mine just sends me texts, so I have no chance to question anything. Not very satisfactory really as our right-wing Govt continues on its plans to privatise our beloved NHS. All in the name of profit of course.
Can I recommend an article on anticoagulation mentioned by mJames1 ...
Living in USA, you might know more about later research into these matters than UK Forum members. I found the summary of this REACT.COM study very interesting, especially the final sentence as this speaks particularly to my situation ...
"The 59-patient REACT.COM study, for example, evaluated tailored anticoagulation with a NOAC guided by continuous monitoring with an previously implanted insertable cardiac monitor. Anticoagulation was used for 30 days after any A-fib episode lasting for an hour or more. The total time on a NOAC was reduced by 94% compared with how long patients would have been treated if they were on chronic anticoagulation. No patients had a stroke, but there was one TIA that was not preceded by A-fib at any time in the year leading up to the event. There were two major bleeds in patients not taking NOACs that likely would have been fatal had they occurred on the background of anticoagulation, Passman said.".
Thanks for the link to that article. Interesting conclusions! It is so frustrating not to be able to communicate with our medical teams. My GP is pretty good about replying to my messages, by my EP is not. His nurse is usually reachable by phone. And weirdly, my health insurance plan has a nurse onsite at the big cardiology practice I use. So, in desperation I can contact her. Hope you get some satisfactory advice soon.
I’m in US. I’ve been on Eliquis for a couple of years and it’s very good as far as being able to control minor cuts and such. It’s said to be better than the older ones.
Natur, Hi from UK. I suppose it's my previous brain bleed that I'm more worried about. A major bleed on anticoagulants is likely fatal, and research indicates anticoagulation is implicated in mini bleeds and early dementia. Not a good look that.
Natur(e) being spooky! Your Reply came soon after I discovered my 10th AF episode had at started at 1pm, although it may have been earlier)?). And no PIPs yet, the ones I was told were "coming". Could have been useful for an event like this. I hope it stops soon.
The wheels of the NHS move exceedingly slow as the effects of 12 years of Conservative cuts are progressively worsening every aspect of medical care !!!!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anticoagulants 
Anticoagulants and COQ10
Anticoagulants and PPIs
anticoagulant 
