For the last three years I’ve suffered paroxysmal AFIB about once every month or two on average. I believe it to be vagally related as it typically occurs in the early hours of the morning and normally I can trace the trigger back to large meals and indigestion or alcohol consumption. Normally my heart rate is elevated in AFIB to around 100bpm and my remedy is 10 minutes of brisk cycling or running that puts my heart back into NSR.
More recently I’ve suffered a few unexplained bouts of AFIB at odd times. My doctor’s solution is to double my current dose of Flecainide from 50 mg twice a day and prescribe Apaxiban. I’m 66 and pretty fit and am concerned about taking a blood thinner when I’m still involved in sports (dinghy sailing, tennis, downhill skiing, cycling) that mean, inevitably, that I end up with an injury every now and then eg a bang on the head from a boom. I’d be interested in people’s views about whether I’d be right to refuse a blood thinner unless and until my AFIB becomes more frequent or gets worse.
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smoothiepete
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I'm 79 and pretty fit and have taken Warfarin regularly for nearly 14 years. I still work, (partime 30 hours a week in College time). I have a bus drivers licence and must pass a medical annually to enable DVLA to renew my licence. No sweat. I would never quit Warfarin. Its your call but why not research the impact of AF caused strokes. If you are lucky you may die ...if unlucky you maybe a burden to your family and friends. Then again you may have a mild stroke, partly recover and not be able to participate in those activities ever again. Also, at 66 how much longer would you plan on carrying on the activities you mention. 1 or 2 years you may get away with it. But I would consider the impact of an aging cardiac system. I mean you may age well but if you don't a stroke may sneak up on you and cause untold, maybe irreversible damage .. if you get my drift.
There are a few members of this forum who have had a stroke ... I hope they comment to you.
"Also, at 66 how much longer would you plan on carrying on the activities you mention. "
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Many of us, including myself, are well past that age, and are still doing and plan on continuing to be sports active for some time. Also, remember that the older we get the more prone we are to falls.
There is no simple answer to this question and one that I personally struggle with for similar reasons to the OP.
Thanks for your reference. I have read most, but, especially your first one where you let the forum know of your husbands stroke.
I have to say I am sympathetic to peeps who do not wish to take medication, especially if it involves a lifetime. I just cannot understand their mind set - there must be one !
Right at the beginning of my journey, back in the days when the NHS was a good organisation who delivered great service ( pre CoVid), my Consultant explained all my drugs, which ones he was chopping out and why, and new ones he explained as additions. He explained ( back in 2010) and we discussed ( looking forward) my options. I rejected Cardioversion and Ablation ... which left two choices ... do nothing and/or the drug route. In those distant days tools for dealing with AF did not embrace Flec or PIP's .... so for me it was a nobrainer ! Take the new pills, Bisoprolol and Warfarin ( no NOAC's back in those days ), which will be for life.
No sweat ! The Consultant also explained how Warfarin worked and all the whys associated with it. I would add that 5mg of Bisoprolol taken at night lasted and served me well from Jan 2010 to August 2023 when I changed to Nebivolol. Still on Warfarin, I self test, whenever I travel I take my test kit wherever - no problems. I have at times adjusted my own doses of Warfarin. My current GP has asked me to switch to a NOAC but I refused. I told her that in my view the drug hadn't been used in the wider community long enough and it may well, as time goes on, produce more side effects than are listed on the paper in the packet.
I would add, that when I read my original write up from the Consultant he advised that I was and would be in future, asymptomatic. I wish you and your husband well and hope that he makes as best a recovery as is possible.
it sounds like you. Have it under control which is great . He was in digoxin but gave him awful diarrhoea for three weeks so come off of those and now Jist in bisoprolol and edoxoban as his main ones . He s seems much more alert since he cut down that high dose to 5 mg . Take care
The medical grounds for taking anticoagulants is currently assessed using the CHADsVASC score (check out using Google). Anyone scoring 1 should consider taking an anticoagulant. For 2 and above, anticoagulants are generally recommended by medics for anyone who has been diagnosed with AF regardless of frequency or intensity in order that the increased risk of stroke is significantly reduced. We are told that whilst anticoagulants do not cause spontaneous bleeds, they will make it take a little longer to stem bleeds. Most of us who have taken them for years notice little difference but anyone with high blood pressure needs to be more careful.
Only you can decide what’s best for you. Live with a significantly higher risk of having a life changing stroke or mitigate that risk and live you life more cautiously. Below is a link to a video by Professor Richard Schilling who is a highly respected clinician where he talks about AF and includes his thinking on AF
"Only you can decide what’s best for you. Live with a significantly higher risk of having a life changing stroke or mitigate that risk and live you life more cautiously. "
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Agreed. However, how many of us actually take the time to know what that "significantly higher risk" actually is?
Years ago I was lucky that my Cardiologist actually drew a line on a chalkboard with my stroke risk on thinners on one side and stroke risk without thinners on the other side. And while the stroke risk without thinners, was higher, the overall stroke risk was quite low. We both decided given my active lifestyle and infrequent episodes that I should remain off thinners for now.
This decision is a difficult and important one for many of us with no cookie cutter answer.
Hopefully, current trials like "React AF " will help us with these types of decisions.
This forum caters for everyone and as with any topic, some will always be more informed than others but we have to deal with the here and now rather than what may or may not happen in America at some time in the future. Apart from anything else, over here, seeing a consultant is a challenge in itself and putting a stroke on hold is not an option….
I think you are a little sensitive ........... it's a problem that emerges with forums like this with an international flavour. Personally, I have no intention of learning about the American system. Its not relevant to me ! I live in UK and have spent decades living in Australia. The question of intelligence is debatable and certainly not relevant to this forum and this particular post !
As a 2 year plus member of this forum and American, and a daily reader, my opinion is the only difference in the UK and US medical system is gov't controlled vs private.
The medical professionals do not vastly differ in treatment. And I think there is mutual respect between all Nations to best serve patients. I believe the majority of US doctors would recommend Apaxiban in the OP's case.
Thankyou so much for linking this video I found it explained everything so clearly - I have been recently diagnosed with AF and spent a night in hospital but as yet still awaiting an appointment with cardiologist to consider ablation. This video was so clear and really pretty reassuring for me - thanks
I can’t take the credit as it was posted by another member a while ago. I’ve heard the Prof talk a couple of times and he is so easy to follow, good luck with your appointment…..
Hi, the blood thinner is to help prevent a Stroke. My husband had a Stroke through a blood clot and I wouldn’t wish that on anyone as it’s devastating for both you and your family.
I was 62 when AF caused a stroke. I wasn't even aware I had AF. I wouldn't wish a stroke on anyone, it is a life changing event which impacts not only you but everyone around you. Had I known I had AF and the stroke risk was there I would have taken 20 tablets a day to ensure I didn't have to deal with the consequences of such an event. We can all be wise in hindsight but prevention is far better than the other option, no one knows the extent of damage a stroke will have.
Exactly . Having the choice would have been nice but he seemed to have been taken out of the system when after he had his ablation in 2017 after the initial follow up . Still can’t work out why he wasn’t given thinners maybe because he was only 59 then .
I was a healthy and active 53 yr old and I had a heart attack (nstemi type2) root cause - undiagnosed and untreated atrial fibrillation. Angiogram with no interventions, discharged with medication and exercise.
I was on Edoxaban, for about 3 years, as a precaution after the initial diagnosis of PAF. It was my cardiologists first choice with a DOAC being preferable for my circumstances. My Afib episodes were not frequent and became nonexistent after starting the Flecainide treatment. I followed my cardiologists advice.
The Edoxaban was well tolerated and I didn’t have any major side effects. I am also a keen climber, this was discussed with my cardiologist and he was ok for me to continue while on an anticoagulant - just wear a helmet and no soloing ie. use ropes; I’ve always done both. Inevitably, I picked up some knocks and bruises, as well as cuts but it was all manageable. My ‘head game’ did change and I was a little bit more conservative with my approach to climbing. I also cycle a great deal too.
Edoxaban has now been withdrawn from my treatment. Last year, I had 2 'minor bleed issues' - basically trace amounts of blood that were detected in other tests. All investigated, all fine - probably just exacerbated by the anti coagulation. Discussed with my cardiologist at a review - I was under the CHAS2DS2-VASc threshold for anti coagulation anyway and as my PAF is stable; no sustained arrhythmia for quite a few years, it was removed.
I understand if my arrhythmia comes back with any regularity then I have to start taking an anti coagulant. I have no qualms about this. I would continue to climb, cycle, run and cycle too unless instructed otherwise.
That was the problem with my husband he must have been asymptomatic for quite a while before he had his stroke . It was I ky a couple of days before thst symptoms really started to show
Interesting that we have just seen a long post from a lady who was not prescribed anticoagulants (they don't thin blood) and suffered an other wise avoidable stroke. If you scroll back no doubt you can find it. Your choice of course but whilst you can always stop taking anticoagulants you can't undo a stroke.
I can tell you that after 20 odd years taking these drugs whilst involved as a motorsport engineer I have yet to need any special treatment for accidental injuries. Mind you I did once remove a rather full rubber glove. lol 😁
The anticoagulants are vital and you may decide to do sports carefully still but not extreme ones!! Also bin the alcohol as it's, as you have found, a trigger!!
Hi, no brainer get on the anticoagulant, keep up with the sports, perhaps consider a helmet for sailing, I guess you use a helmet for skiing and cycling. I've had a severe stroke, and was thrombolysed fast. The initial synopsis likelihood was warning of life changing outcome, severe risks from the thrombolysing treatment itself but it gives you the best chance of recovery. Very fortunate I have made, to most people, what looks like a full recovery but I have some right leg weakness and some language issues which might be confused with Alzheimer's by some observers.
You don't want to have a stroke. Since my stroke Afib has been detected from an ECG implanted device so I'm now on anticoagulant Edoxaban with no side effects as well as atorovastatin again s with no noticeable side effects.
I have dinghy sailed and raced, so I understand the risks, for many a year until moving away from my club. I have cycled too, but since the stroke I have stopped because of being off piste and rural, when cycling solo. Will still cycle shorter distances in company.
I run now and have fallen twice banging my face. Just bruised badly but I kept a strong awareness for concussion or any changes for the next 36 hours.
You're asking for opinion, not medical advice. If the exercise is an important part of your lifestyle, the inherent risks of the sport I suggest are far greater, than the risks of stroke per se, or stroke reduction + anti coagulant per se. Exercise should in itself improve your risk reduction score for cardiovascular health which is why I now run. I am male aged 71. I run 4-5 times a week, Parkrun as often as possible , have done 10k events.
I prefer to take anticoagulant, with a score of 2 due to age/sex. No other comorbidities.
Strokes and AFib run in my family, which doesn’t add to the scoring system but is worth considering. My sisters had strokes at 64 and 65, and I had a retinal vein occlusion at 64 - before diagnosis.
My AFib is now permanent, and I did recently ask at the clinic whether this meant my stroke risk was now higher. The answer was that the anticoagulants should keep me safe, but also that all it takes is 30 minutes of AFib to cause clot formation.
Of course, all of these things are calculated on a population wide basis. Nobody truly knows their own risk - although I feel there is enough in my background to recommend anticoagulants. It is always down to you to make the decision, with medical advice.
smoothiepete How are you monitoring whether you are in afib or not ?
If you have not, consider asking your doctor to wear a holter monitor or other medical device for an extended period. Will give an accurate eval of your afib and medication recommendations. Best in lieu of an Apple Watch or other device. Afib can be silent especially for those that are active and fit.
Also, consult with your doctor about concerns with Apaxiban. He thought it best.
I certainly respect your active lifestyle as a former runner myself. Though I am 11 years older, may I advise, prepare to "slow down". Another point to discuss with your doctor.
If you tolerate anti coag well then taking them reduces the risk of a stroke by 66%. You could still. have one but it's far less likely. You need to have your Chadd score done.... It maybe you don't need them if your score is low enough.. I'd talk it through with your cardiologist, explaining your active pursuits.
Statistics are so misleading and it needs to be explained that a reduction of more than 66% of the risk of a stroke is on top of a low overall risk of stroke in the first place. (Even if we suffer with AF) It is just that those of us with AF are much more at risk than the general population.
I read somewhere that after a stroke your risk of a subsequent one is very significantly increased so blood thinners like apixaban are even more important, but as time goes on and you recover and remain stroke free, after five years your risk is no greater than that of the population as a whole at that age. But of course, it will always be greater if you have AF.
Completely understand. I was simply using that often quoted statistic as an example that your stroke risk is reduced but not removed on anti coag. Each case has to be judged on an individual basis. If someone decides against coags it does not mean that if they do have a stroke it wouldn't have happened on anti coagulant. It may have done. I'm not advocating anti coags either way but simply be clear about the individual risks for that person.. No one wants a stroke if it can be avoided.
I understand completely but I think a good degree of scepticism is necessary about any of these health statistics, although they might provide a good general guide. I was interested in someone else mentioning the CHA2DS2 VA score thing, new to me, but how can anything based on five or six general questions give you a percentage risk score which is not just in percentage terms but in tenths of a percent when there are so many other variables! The other test on risk from anticoags was even more baffling as the score seemed to be affected by taking the anticoag anyway. I must ask my doctor about these and find out more about how they are supposed to be used, but I will probably find more on line than trying to get information from my GP. As you say, all of us has just to judge what the greatest risk factors are for each of us personally.
You'd probably find it best to ask your heart specialist tbh.. I'm not a fan of stats either. However both my EP and heart surgeon felt I should be on anti coags. I don't tolerate them well so ended on a half dose followed by a minimaze which included a LAA Flap closure. My EP used the CHAD too. Essentially though you are weighing up the risks with or without this treatment for you.
I highly recommend to get an ablation. I was similar, but happening every 2 weeks, and last December I had it done. Now, no AFib, no meds, running, yoga, bicycling, etc etc. I'm 59 and I got my life back.
That’s what we want but it’s playing the long waiting game to get one , meanwhile hubby is in persistent AF so hearing blood thinners are only 66% preventative to a stroke isnt very reassuring as he only had one five months ago due to AF.
I had a P/A/F induced stroke when I was 56, a year after diagnosis, thankfully I had been taken prescribed soluble Aspirin 375mg a day which I think prevented a more severe stroke, I don't know but after the stroke I was put on Warfarin, had to give up my career as a consequence of the stroke, I guess if I had been taking an anticoagulant during that year then I would not have had a stroke. I have been taking an anticoagulant ever since and never had any bleed problems in over 20 years. It might be an idea to think of the consequences of having a stroke as opposed to taking anticoagulants.
Hi opal11k, this is for the benefit of anyone reading your post and yourself too. There is a fundamental difference between an antiplatelet medication (aspirin works in this way but has unwelcome side effects which is why it's no longer prescribed long term , platelets associated with cholesterol form in the vascular system and can break off and block a blood vessel) more usual name is Clopidogrel, and an anticoagulant for example warfarin or edoxaban which works to prevent a clot forming, for example with Afib and stroke.My Afib was found only after the implanting of a LINQ ECG monitoring device which works 24/7/365 using a home mobile access modem (provided). Unfortunately after my unexplained severe stroke. I have moments of hindsight wishful thinking because I did have a GP referred full cardiovascular screening around 6 years previous. But 6 years ago knowledge, drugs, guidance to health practitioners was all different. For example the LINQ device is recent NICE guidance. As I said the stroke came first.
To anyone reading this, a stroke is to be avoided, and take any medical assistance or advice seriously. Remember, weigh up the experience of the medical team against your experience when making a decision. But also do remember too that you know your own body too.
And finally, I do get anxious, but it's rarely helpful when a decision is required.
I wished I had taken blood thinners shortly after my PAF started. It became more frequent. The episodes were one every two or three months and then became monthly then fortnightly lasting anywhere from 12 hours to 36 hours. I find the episodes very debilitating. I recently went to A&E only to find I couldn’t be shocked back into rhythm because I wasn’t on blood thinners. That’s the reason I would take them so I could have a cardioversion if needed
You can have a cardioversion within the first 48 hours from starting of the episode, this is the international protocol. But NHS A&E would just ignore you if the arrhythmia is not life threatening. After the 48 hours you need to be on anticoagulants for at least 4 weeks. So all the young people with Afib (that don't need to be on anticoagulants) are penalised by how NHS is approaching this.
At my A&E, they would have given me the cardioversion straight away if I attended within the timescale, but I hadn’t and because I was no blood thinners, they would not give me the cardioversion until I’ve been on the blood thinners for at least a month because of the treatment I was taking. I was told I should always try to doses of the PIP first before attending the A&E as it took 12 hours for the AF to resolve itself after taking a PIP, I was always outside the 24 hour limit they’d set at the local hospital. I attend the rules are different. Whether you’re living in in Scotland, England and Wales. There might be one NHS, but they run differently in each of the countries I live in South Wales
I live in South Wales too. I complained about this to local MP and she said to make the complaint to the Welsh Assembly because NHS is devolved. I will do so, I hope one day cardioversion will be done to everyone suitable in A&E. I had to run abroad to not lose the 48 h window, totally unacceptable!
A private cardiologist in London said that in London they would have cardioverted me. NHS Wales needs to be sorted, they can't spoil patients health to not execute a 5 minutes procedure.
Which A&E do you go that would cardiovert you within the 48 h?
I can only share my story. Diagnosed with AFib in 2015. I had a stroke in 2017 while on an aspirin regime prescribed by an incompetent cardiologist because I had a low CHAD score. Was in Baltimore at the time so was treated at Johns Hopkins. Lost peripheral vision. The doctor at JH said I was lucky. I was. The odds he told me were 20% dead, 40% severely disabled, and the rest like me, zero to moderate impairment. I take Eliquis 5mg twice daily. Do your research, balance the risks, but never underestimate what a stroke might, actually might LIKELY, do to your quality of life. Best of luck.
Ask yourself this question...would you rather have a stroke before you are forced to take them or are you a gambler and figure you are not like the majority of Afib sufferers. Eliquis saved my life.
Before you jump on the blood thinner band wagon and seeing how you have narrowed down your triggers & you are active and fir why don't you try working on your gut health?
Some of the things that have helped me are not having a big meal 2 hours before sleeping. Have a herbal tea after dinner. Cut down on drinking (I don't drink)
Cut down on gluten, so try not to eat bread or pasta at night.
Make sure there is no MSG in your food.
Take magnesium in your water and sip on a bottle of water all day. When you play sports put some magnesium drops in your bottle.
If you do have a heavy meal have a shot of apple cider vinegar with a small amount of warm water.
Just work on your gut health and vagus nerve. See if your Afib is less frequent.
Good luck & just be positive which is the energy I get from your message anyway.
What you are suggesting regarding lifestyle changes is highly commendable in terms of controlling symptoms but once diagnosed with AF, the medics say the increased risk of stroke remains regardless of frequency and intensity…….
The thing is it doesn't seem that he has any structural heart problems (Correct me if I am wrong as I don't know your history), Afib can be triggered by an unhappy vagus nerve. So if Afib stops then no need for 'blood thinners'.
A very interesting response. Can you point me to the research study where your regime has had trials and been tested using ethical and scientific principles for efficacy and stroke reduction?
Sorry but I don't act on medical research on a study of one. I'm not sure this is the right site for such a posting, seems a bit anti HealthUnlocked to me, but it's democratic so buyer beware! Before modern medicine, in the days of herbal remedies, life expectancy was a lot lower. Good luck, the lottery may be a better bet.
Hope you don't mind me asking but did you take the cov vacx? Because that was tested on 8 mice & apparently no humans, not even one. Does that make you feel more comfortable to take a drug?
Your profile and posts, many removed, says it all. I've made my mistake engaging with you but hopefully other people will now avoid. People using this site have had serious illnesses and the anxiety associated with understanding their condition. It's not a battleground for sceptics desperate to be heard.
For the record I also had Afib but I am also open to all suggestions and I take information that I want and listen to my body. Each to their own. My suggestion to this post is my experience to reduce and almost eliminate my symptoms so I am sharing that knowledge. Do what you like with that knowledge.
Have a beautiful day and no hard feelings as we don't know each other so I am not arguing with you I am just pointing out that not all medicine from big Pharma is perfect.
My tuppence worth. 59 years old. Paroxysmal Afib, similar triggers. Given a score of 0 a couple of years ago and had a TIA. Now take Edoxaban but when I cycle, twice a week, I miss a dose until I get home, unless I've had Afib the day before. My thinking is the to manage the risk of a stroke versus a bleed out if I'm hit by a car.
Diagnosed with AF told to take Apixaban by my consultant but didn't! (I was an idiot in retrospect) Had a major stroke 4 years ago and was completely paralysed down my right side lost a piece of my brain that I can never get back with all its experience. Spent weeks in hospital on the stroke ward and saw some awful things that can happen if you have a stroke. Will never stop taking the Apixaban now. (5mg x 2) I'm very active and cycle most days and never worry about getting an injury. Almost 80 now. It's worse to have a stroke than the risk of an injury in my book as you lose so much if you have a stroke. I still have some right side weakness and I do weights' to try and get some strength and dexterity back. I'm no longer able to draw though. (I was an architect) Also have trouble with speech still and self control as the piece of brain I lost controlled those functions. Just visit your local stroke ward and see what can happen if you are unsure.
Hi Roy MacDonald, I had a right side severe stroke too, but had the FAST thrombolysing treatment. Of all the people in the stroke unit in the week before I was admitted and in the three days I was there, I was the only one who walked out, albeit with right side weakness and some language issues that observers will see as Alzheimer's (that's what I say to myself). Like you in gratitude to the NHS for giving me another go, I now exercise a lot including running for 4 -5 days a week - slowly but I get the heart rate up! I was 70, now 18 months on, your story is inspiring and validating my approach. I'm giving myself the best chance of getting to 80 and still exercising!
After my afib stroke which took out part of my occipital region, I was in Johns Hopkins, Baltimore, in their stroke unit four days. Lost some peripheral vision, but was otherwise unaffected. I noticed I was very popular. Finally one nurse intimated to me why. I could speak, walk, converse, laugh . . . in other words, I was where staff came after dealing with the devastating realities other stroke victims in other rooms they dealt with throughout the day. I was the lucky one, the one where didn't need extensive rehab, who was going back home mostly normal. It was a sobering experience being on that unit. And that was at one of the best hospitals in the States. There are things worse than death and unfortunately, stroke can plumb the depths of that territory.
This could have been written by me! 64..walk garden weight train .50mg upped to 100 last year. This week I've had 4 episodes 1 no idea why. Another 2 small red wine to celebrate my birthday..3rd packing and leaving to go from France to uk as we do every 3 months(and it happened last time we left ) 4th chili oil and a small fizz (belated birthday) .I was told 65yrs femal blood thinners. I went to Dr about my 4 episodes ..he took my BP and it was high so now doing 7 day readings got ECG friday and goodness knows what else. Personally I'll have the thinners now and BP tabs. I've cut back on salt am healthy weight and don't eat processed so cook all our own meals .don't drink (apart from above) or smoke. Sometimes our bodies haven't been made properly? Such a pain I know but it is what it is. Lucky to be here at 64 when so many aren't.
A few years back my GP told me to stop taking aspirin (those unenlightened Afib days) as I was having stomach issues. He said I should start on a DOAC "instead" but he'd wait until my stomach settled. A few weeks later I had a TIA, the scariest thing ever. Immediately prescribed Apixaban. I don't give it much thought, I bike, play sports, drive a fast car - I know anything involving fracturing a femur or pelvis would likely be the end of me - but I'm more scared of another stroke than that. I don't drink at all now, nor eat a lot of rich food - definite Afib triggers for me. You don't have to go from doing it all to nothing - this winter I'm going snowshoeing, skidooing, husky sledding for example, - but no downhill skiing. I've accepted I have a medical condition that means I have to choose wisely in order to continue having fun, without risking it all. I'd rather sit in a chair forever than go uncoagulated, and leave myself a burden to my family. An uncle of mine had a massive stroke in his 40s, and not just his, but his wife and kids' lives were changed and blighted for decades, I figure I owe it to my family to minimise that risk for their sakes, particularly as we travel a lot, and not always readily near an emergency hospital to be embolised. I don't actively fear falling off my bike, crashing my car, holiday sailing, falling over and banging my head, or dying immediately from a stroke : I do actively fear living in the aftermath of a stroke.
There can be no right or wrong answer to this, I fear. Your risk of having an ischaemic stroke during one of your episodes of paroxysmal AF is relatively high (compared to the risk of those not suffering from this condition) and as you grow older that risk may be increasing.
I can only relate my own story as someone who at age 74 thought an aspirin a day and a beta blocker was more than enough and I had just spent many months being extremely active in getting my large garden all up together walking long distances each day with the dog and so on. Then abruptly one July afternoon when I thought I was fighting fit, the stroke suddenly hit.
I would maintain that the risk from anticoagulants even with cycling and sailing is far less than that of stroke; I still fall off ladders and get clouts on the head from low beams in maintaining an active life style for someone of my age. I was extremely fortunate that my stroke did not cause me permanent disablement but even so it has caused me two years of suffering, clinical depression and anxiety and I am still not recovered entirely physically three years later.
I would say that the stroke risk (although again just statistically greater with AF) is far more than the risks of the anticoagulant, especially if you adopt some careful strategies to avoid likely injury.
There is a right or wrong answer to this - but unfortunately you'll only know in hindsight whether the decision you made was right or wrong. Taking or not taking anticoagulants both come with risks. Your CHA2DS2-VASc score for Atrial Fibrillation stroke risk assists decision making but so does your HAS-BLED score for major bleeding risk. I note the contradictions in the assessments e.g. increasing age increases the risk of both stroke and a major bleed i.e. supports taking anticoagulant on one hand but is a reason not to on the other hand, ditto for having previously had a stroke. The bottom line is we (AFIB sufferers) need to make an informed decision about whether to taken an anticoagulant or not i.e. consider the pro's and con's relevant to our circumstances and discuss with our specialist before making our decision. We should also be aware that our situation is dynamic and we need to be prepared to re-visit our decision(s) as our circumstances change. I have PAF and have a CHA2DS2-VASc score of 0, so my decision was relatively easy - no anticoagulant. However, that doesn't mean I am immune to having an AFIB induced stroke. Time will tell whether my decision was right or not. Assuming I stay alive and continue to suffer from AFIB I know I will revisit this issue at some stage and again be faced with another decision re taking anticoagulants.
As the balance of risks changes I suspect I'll start taking an anticoagulant.
Must admit I have never heard of the CHA2DS2-VASc score system though I managed to find it very quickly. It seems to be a rather rough and ready approach in terms of the questions asked but I was surprised to see my risk was 5 to 15,26% a year (rather sceptical about that level of precision!) Anyway, if somebody said I had a 15% risk of having a fatal car accident every year I would be quite terrified! 🤣 As for the HAS BLED score that might be 19%! But probably because I declared taking apixaban. So leaves me puzzled as to which is the greater risk!
Your approach with a balance of risks calculation is very interesting but also logical. Thanks for introducing me to these two risk assessments which none of my doctors have mentioned to me. But they don't mention very much just dish out the drugs!
Any Googling would have found ample evidence to the contrary e.g.
Refer to paper titled Predictive value of CHA2DS2-VASc scores regarding the risk of stroke and all-cause mortality in patients with atrial fibrillation
Conclusion: The CHA2DS2-VASc score correctly predicted the patients at high-risk for 3 to 5 years mortality and confirmed its significant predictive value in the patients with AF.
Refer to paper titled Diagnostic Accuracy of the HAS-BLED Bleeding Score in VKA- or DOAC-Treated Patients With Atrial Fibrillation: A Systematic Review and Meta-Analysis
Conclusion: The HAS-BLED score has moderate predictive abilities for bleeding risks in patients with AF regardless of type of oral anticoagulants. Current evidence support that the HAS-BLED score is at least non-inferior to the HEMORR2HAGES, the ATRIA, the ORBIT, the GARFIELD-AF, the CHADS2, the CHA2DS2-VASc, or the ABC scores.
Tools such as these are used to assist decision-making. Whether they are actually used by your doctor or not, they will still consider the factors used in the tools (and possibly others), when they advise you about taking an anticoagulant.
I personally find them very helpful - but as my username suggests, I'm a numbers person 🙂
But there are two types of stroke too, one a lot more common than the other. Putting the two types of scoring systems side by side as if they have a relationship in the circumstances of the initial question is in my view spurious. An early statistical paper showed that there was a direct correlation between the rise in washing machine sales and road deaths! Current NICE guidance expects deaths from stroke to be reduced by 6500 as a result of widening the access to EDOXABAN. My handle looks for optimism and hope, numbers alone are reductive. I think a lot of people come to this site because they are anxious and need support. They do need good, balanced information hopefully not too much scepticism or outlyer based thinking. Sadly some people use this platform as an echo chamber for outlyer thinking, in my view!
I would say you need an anticoagulant, stroke risk just isn't worth it. You can be in afib at anytime and not always know it. My brother didn't and had 4 strokes, losing his left periferal vision. I had to give up horse riding because of the anticoagulants but don't want to risk a brain bleed
You have raised an interesting post which has generated 40 interesting replies. Whilst there is never any obligation to acknowledge replies, it might be helpful to members if you shared your current thinking on the subject…….
No can predict when your heart will develop a blood clot. I have AF for about four years now. I forgot to take my blood thinners on a couple of occasions, result I had a mini stroke. Lucky for me no lasting damage. I know that my heart said when I reached 65 my scores would go from a 1 to a 2 for risk factor.
It's NOT a blood thinner. It has no effect on the viscosity of the blood,Apixaban and other similar drugs interfere with the clotting process so as to avoid blood clots, a very significant risk with AF,however frequent/ infrequent. It annoys me that even medical professionals who should know better refer to them thus frightening or putting people off taking them. You will not bleed out ,takes longer to stop bleeding, and you bruise more easily. The only exception is head injury,which is the same for people not on anticoagulants, or significant trauma,again same as 'normal ' people. There are antidotes and procedures to deal with any significant issues.
If you have been advised to go onto A/C I'd follow it.
I had a mini stroke and was terrified. I had been asking to go onto AC previously due to family history. So glad I was promptly put on!
Re risk of intracranial bleed, what about someone (like me) who hasn't suffered a head trauma, but has developed unexplained chronic bilateral subdural haematomas, would you say my stroke /bleed risk, several years after recovering from the bleeds, is the same now as for a "normal" person?
My fear is that if I am on anticoagulants, living alone as I do, and similar unexpected/unexplained bleeds re-occur, I might well become incapacitated before I am able to call for the "antidotes and procedures" you mentioned.
I am genuinely uncertain which way to jump. Any thoughts?
It's like you are between a rock and a hard place! Very difficult. Has there ever been found a cause for your subdural haematology ? My aunt had one out of the blue.Sorry if I was generalising too much. I'm a bit up against it at present.
I really don't know any answers here,sorry.
I expect keeping tge AF as much under control as possible is the aim? X
Actually my stroke risk is probable even higher (aside from my bleed fears), because an ASA (atrial Septal Aneurysm) casually mentioned on my transthoracic echocardiogram in May 22 hasn't been mentioned by anyone medical then or since, never mind being measured for its potential extra stroke risks, nor monitored as guidelines suggest it should be. Doh!
And I've only ever talked to an Arrhythmia Nurse and a young newly trained pharmacist in Haematology. And dismissed from both lists.
At least I have just asked my GP to be re-referred to Cardiology re my ASA, when I can hopefully finally also have a realistic conversation, for the first time, about my unique risks re stroke and intracranial bleeds.
PS. I forgot to answer your question about "causes" of my subdural haematomas. No it's just guesswork by the neurosurgeons I spoke to. Perhaps a congenital weakness in my brain blood vessels? "Straining on the toilet" was one such "guess", but I doubt I can avoid the toilet for the rest of my life. 🤔😄
as much as you love your sport anyone with afib is wise to take advice and take anticoagulants (they are not blood thinners) as it is better than a stroke
I am on apixaban which my EP said is one of the kindest to brain and stomach
I did have a really nasty fall on my head and had a brain haemorrhage. I was taken into hospital and given the reversal drug, kept off apixaban for a couple of weeks snd fine. My face looked like it had been In a fight, but…..!!!!
Only you and your Dr can make that decision between you. Though personally I would go on them sooner rather than later depending on your Chads Vasc score. I know plenty of people on anticoagulants who are carrying on very well with active lives with no problems at all.
I was lucky and did not develop Af until 73. I have been active all my life - I was a Physical training Instructor and a Parachute Jumping Instructor in the RAF. So am used to being active and still am despite prostate cancer and AF.
My initial experience of Af was awful and I couldn't do any of the things I enjoyed doing for a while - skiing, sailing etc and even going to the gym pretty much every day went out of the window. I had persistent Af and had 3 cardioversions which kept me in NSR for about 3 out of 4 years which was wonderful as able to go back to doing most of the things I wanted. I was about to have my ablation when covid struck. Three cancellations later and then had to have all the scans and tests again as it had been over 2 years since they had been done, to find, that even though I had been in NSR for most of that time up until a couple of weeks before the tests and scans my heart had remodelled itself and further CV's or ablations would not be useful as unlikley to last. So here I am in Permanent AF on just apixaban (Eliquis) anticoagulant as couldn't take any type of beta blocker, calcium channel blocker or any rate control medication and now back to doing all the things I have always done. I have just had my 80th birthday and have had no problems whatsoever with them. I bruise more easily but I can hardly notice that any bleeding takes longer to stop (I have just sliced the top of my little finger using a new potato peeler and it healed beautifully within 3 -5 days. I bought some tubes of special powder which is supposed to stem bleeding quickly for people like us on anticoagulants ( I think they come from Australia and someone on here recommended them) I haven't used them once and I fear they are out of date now and wonder should I buy more.
As I said it is up to you but taking an anticoagulant such as Apixaban/Eliquis has not altered my life at all.
Remove those triggers as the 1st priority is to reduce and preferably stop the episodes.
It is possible! to take a sabbatical from your normal sports for a year. I stopped tennis, skiing and cycling and substituted brisk daily walks (1 mile) with Nordic poles and walking basketball.
Most here will advise taking anticoags. I am 70 and turned down that offer at 60 with Luke warm acceptance from my cardio. You might want to hear what a leading AF medic says on the subject:
Link worked OK for me, and I saw that video last week.
As someone who has suffered unexplained chronic bilateral subdural haematomas in the past, it was impossible for me not to notice that Professor Schilling says he ignores the HAS-BLED score with his patients, but didn't give any reasoning for this. Disappointing!
I am surprised your dr. has not put you on thinners before now and more surprised to be blunt, that you need to query them. As soon as i was diagnosed this year with paroxysmal AF which is rare, immediately my hospital put me on Apixaban which i take regularly, they told me this is the one most important drug in AF i.e. a Thinner.
I lost my Mum at 42 years old just wish back then blood thinners were available to her. I am 76 now and would never consider stopping them even though my AF is very rare now maybe once in 2 months, i am still at 50% more risk of mainly Stroke than anyone without AF.
So no contest, you must do what you think, but i think you must know the answer without asking. Good Luck.
Oh! and sorry forgot to add to my reply to you..... i stopped ALCOHOL straight away as this is one of the main triggers for anyone suffering with AF, and i know, (not think), that this was the main cause of my own. Alcohol and AF does not bode well and can go hand in hand in many cases.
I am on the same dose of Flecainide as you - 100mg twice a day which has put an end to my AF episodes - ( just one around the time I must have been infected with covid when an extra pill ended the episode in a few hours) and I stopped taking anticoagulants when it seemed they had virtually ended. I am 79, female and not very active as have chronic fatigue but the EP who originally prescribed the Flecainide for me as a PIP told me that unless fast episodes of AF continued for 12 hours or more I was not at risk of stroke. Of course, we are all different but it does seem better to avoid drugs you don’t need if they can be harmful.
Of course a stroke is not necessarily "caused" by AF, as many medical experts agree, it is likely strokes are also "caused" by the company AF keeps" ie. the other medical conditions we suffer.
Re a PIP approach to anticoagulation, how long to continue anticoagulation after an AF event ends, your EP's opinion is one of many differing views, and it would probably be best to keep an open mind on that.
The current trial of the PIP approach in USA using Apple Watches has a protocol of 30 days anticoagulation after an AF event ends. Let's hope a bit more clarity on these issues are found, even if it will take years for results to finally appear.
You don't say what your current CHADSVASC score is, but presumably it is at least 2, with an extra point since you turned 65. My present score (at 63) is 2 and I have been on Apixaban since an NSTEMI in April last year, followed by a bout of persistent AF, which was stopped by a Catheter Ablation in September 2022. As far as I am aware I have had no AF since then... BUT of course I may have had some undetected spells and in any case I also understand that presently being in sinus rhythm does not reduce my CHADSVASC score unfortunately.
I empathise with your concerns relating to your sporting activities as this has been a worry for me, as I am also quite active and it is a massive part of my overall wellbeing. I have therefore decided to continue to cycle, but bought a new helmet with the latest safety features (MIPS in particular) and I am very cautious and no longer ride technical off road where I am more likely to fall. Of course on road I could be hit by a car, but if so wearing a helmet and being on anti-coagulation might not make that much difference if I was unlucky. I am also planning to go skiing again in the new year, again with a new helmet, with the intention of cruising some easy blue runs and just enjoying being in the mountains. I have decided my lead climbing days are probably over, but may still climb with a helmet as a second protected by a rope.
It's a difficult balance of risks to consider and as others have said only you can make the decision as to what is best for you. All the best.
Remember that your blood will still clot as Apixaban only delays clotting for about 20 mins so no chance of you bleeding to death while you are on it and injure yourself. It just delays the clot for long enough to pass through the small veins in your brain, thus avoiding damage to the brain. You will still recover from an injury to your body in the normal way. There will just be a bit more blood than usual, but nothing to worry about. I bleed no more than anybody else when I have injections. My dentist takes no precautions at all when he works on my teeth.
It is a difficult one. I suggest to discuss your CHADVAS score with your doctor and evaluate pros and cons. Everyone that is over 65 years old and with afib (any type and frequency) is prescribed anticoagulants according to guidelines. The reason is because that has been defined like the cut off between stroke risk and risk of major brain bleed (which is not much nicer than stroke) in an active, working, young person lifestyle. Plus the stoke risk rises quickly with age.
(You can look for sources on google, all medical papers with incidence numbers are open and available)
I can understand your pain because I had to take anticoagulants for cardioversion and they had a massive toll on my lifestyle and consequently my mental health. Not everyone understands this because again depends on your lifestyle and what you value most. For me quality of life and being able to do things I enjoy it's all!
If I was in your situation (and I will in 27 years as this problem doesn't live you alone ever) I would probably switch outdoor activities with gym and controlled environment activities. Or lower risk outdoor. I know it's not the same but it might be a compromise.
I surf and it's very common to hit your head with the board (I do at least once per season), so I didn't and I won't surf, for example, on anticoagulants, but the idea of not being able to do it one day (if I get there), it's already causing me pain... I will probably switch to swimming in the ocean instead, not the same but still enjoyable for me.
Anyway discuss with your cardiologist and try to push them to have an holistic approach considering your overall health like mental health and keeping high level of fitness. It's not because we have afib, we won't get anything else, we can't let afib taking away other bits of our health too.
hi smoothie, Iv been off anticoagulants for past few years due to zero chads score but recently Iv been having small episodes of AFIB. After a meeting with cardiologist My BP was a little higher than normal and it’s now pushed me into a score 1.! I’m 55 fit and healthy but my cardiologist has prescribed me anticoagulants now and to be honest I’m not bothered because I’d rather be on them than suffer a stroke.??
Without sounding depressing if you suffer a serious stroke then chances are you won’t be taking part in any cycling or skiing again.?? Weigh the pros and cons up mate. I wish you well in whatever you choose to do.👍
Try and get your left atrial appendage (hope thats the right term) operated on so that it doesnt collect blood clots to cause strokes. Its commonly done as part of a mini maze procedure I understand but it is probably available as a standalone op. Then no need for anti coagulents.
I'm similar age with well controlled PAfib and started rivaroxaban about five years ago. I like to craft so sharp xacto knives can be involved. The worst injury was when I've accidentally punched a hole in my index finger. The only thing I had to do to stop it bleeding was to apply a bit of pressure. It was not as I imagined which was a relief. It just took much longer for it not to bleed so keep the pressure on for ten minutes or so. A well placed pressure bandage can do the job. The only thing I wont do is go out in icy conditions. I'm afraid I will fall and hit my head. I dont want a brain bleed. As an aside beta blockers help keep my heart beat slowed so I dont go into Afib.
For me, it’s what would impact my lifestyle the most? A stroke? Or a major bleed from injuries? I’ve decided I want to do all I can to avoid much the higher risk of stroke due to a-fib. That means taking a DOAC & being a little more selective about my activities. That being said, I’ve had a few injuries while taking the DOAC & have not experienced any life-threatening bleeding.
This is a struggle that I have with my Dr. I am aware whenever I go into AFIB and for several years, used it as pill in the pocket, moving into the prescribed dosage of twice a day for several days after an incident. Currently since I have had more frequent episodes, I take half the prescribed dosage so that I have some in my system at all times. I wear a smart watch and monitor myself regularly. The important point here is that I am aware of my episodes and also wear a watch that can alert me. Some folks are unaware when they have episodes.
There is a very large study (several 1,000 participants) occurring right now that is testing using blood thinners as pill in the pocket but it won’t be concluded for a couple of years. The question to me then becomes, “Why are they doing this study if there are not serious concerns about blood thinners?”
It is a tough question, but at 76, I am also concerned about hemorrhage stroke and falls/accidents. My position is not a popular one as you will see reading the comments, but it has worked for me for several years. Wishing you the best of luck whatever you decide to do.
Lots of excellent replies.In my case, Canadian, 78 with mild Afib and was very active.
In my twenties, I started heavy use of vit E (for about 30 years) and credit it for eliminating diagnosed arthritis by 40yo.
This and becoming an active 10k runner had lots to do with being the only living member of my family of 6 (I was the older of the 4) now.
I have always planned for healthy later years.
I will do whatever will prevent a stroke. But I try to minimize pills.
I researched Eliquis vs Warafin and decided against Warafin. I have been on Eliquis for about few years and don't notice any impact.
My cardiologist put me on 5mg bisoprolol and I cut it to 2.5, as it made me feel more energetic, without noticing increase in heart rate. Told him after a few months and he said ok.
My approach is to really research and then make a decision and then review with my medical people.
My new thinking is reducing my hypertension and cholesterol meds...after more research.
At almost 79, I probably will die of something in the next 10 years.
I will enjoy these years and not worry...except a stroke.
I can only state my own experience with Apixaban. I was put on it following an initial period of Warfarin, following a surprise diagnosis of AFib several years ago. I'm still on it now, but have no love for at all. I tripped over in my garden on 3 March 2021, hurting my left leg. The bruising was horrendous (GP said due to Apixaban) and I still have a large lump on my lower leg, the skin is often very red, almost purple, and sometimes a bit warm. It also breaks out sometimes, as it has now, with leg ulcers. Prior to Apixaban, I healed much more quickly and easily.
SmoothPete, I am 68 and was diagnosed AFIB in 2014. They put me on the rat poison (Warfarin) and later since I didn't feel well when taking Warfarin, noy withstanding the pain in the rear required to get your INR tested wanted me to go on Apixaban or some other newer thinner. I decided after much research on the net and since I am more inclined to trying natural solutions so I decided on that direction.
I motorcycle, ebike and hike.
I take 2000FU (Fibrilytic Units) 1 capsule /day of Nattokinase along with additional thinners such as Vitamins "E" and "D". I also take 2 Turmeric capsules daily (800mg) each.
So far I've been fine. The side affects of the prescription thinners seemed to awful for me to deal with so I went natural. The Nattokinase is know even by nih.gov here in USA as effective as big buck clot dissolving drugs.
Need to factor in the risk not just of an injury that could lead to a bleed but the risk of any bleed having a material consequence.
I had a major trauma from MTB accident that resulted in apart from a damaged bike, a broken helmet (it did it’s job, no concussion), 9 broken ribs and a partially collapsed lung. I was pumped full of morphine and they managed to keep me out of iCU. but considered moving me to the trauma ward in Cardiff. Apart from a very yellow / black shoulder at the time, there were, I believe, no longer term impact from being on anticoagulants and no catastrophic bleed.
Having said that, I don’t generally have any issues from excessive bleeding from jabs / cuts, so maybe the anti coagulants aren’t that effective on me 🤔.
I’m not recommending either way but sharing personal experience.
Also, my brother is on a very low dose (2.5mg twice a day) since a DVT and has been advised to miss a dose before diving or other more risky endeavours, so mot an all or nothing approach.
As you can see the topic , much like statins gets much debate depending on which side of the medical debate you are on.I'm going to put this in simple terms , the doctor has decided that you are at a higher risk of having a stroke now than you were before when your AF caused less events.
It is definitely worth taking this medication to help reduce clots and strokes caused by clots if your recommended them.
You can still do lots of very physical sports that can cause some injuries without issue as long as you take extra precautions like thicker clothing or pads on places that are vulnerable to injury. You get the best if both worlds then.
If you find you have a problem with bruising or other side effects from the medication which you can't cope with go back to the GP get a reduced dose or an alternative, just as you would with any prescribed medication.
It's not worth taking the risk of having a stroke.
Taking preventative medications may not have positive effects that you feel but they do a vital job and help give you confidence to live the exciting life you clearly have with more confidence that the worst case scenario is being defended against.
It's better sticking to the simple road rather than getting more confused by the big debates.
Take care and enjoy your life , you make me feel quite envious, Bee
My Heart Specialist has put my CHAD score at CHAD 5.
2 = STROKE - Embollic
1 = FEMALE
1 = over 65
1 = AF
But you are a man, just turned 66.
Well, the weigh up risk is yours. At CHAD 5 I have a 12.5%. of having another stroke. Mine was due to thyroid cancer which was entirely removed 4 months post stroke.
My AF continues due to dilated Atrial severely and regurgitation (these go together). No cardioversion, abration ot anti-arrhymic meds can be done.
I've been discharged from outpatients call up.
That's me.
Yesterday I stabbed my left hand with working with my secauteurs. Blood oozing and running. I had not had my 10am - 12 midday PRADAZA 110mg. Lower Dose.
Blood eventually stopped.
I had an alarm but rung st John. They wiped about my hand and fingers, bandaged and talked Tentanus. I had 24 hours as last Tetanus was 8.1/2 years ago.
Was based on dirty secateurs.
I have had bangs on back of head. No checks done.
Perhaps you shold talk about PRADAXA twice daily and has a lower 110mg dose twice day. It also has an antidote.
I had AFib for years and it was never a real problem until this summer. My Chads score is zero and I am fit and lift weights. I decided to take the anticoagulants because the only thing on my mind when I was in a bad episode was “will I have a stroke?” - I will probably be off them in January (post ablation) but what I can say is that I haven’t had any side effects like bruising, I did cut my finger and it bled a little more than usual but nothing dramatic and to be honest glad to be on the blood thinners and pleasantly surprised that there were no side effects
My Afib started when I was 67, suddenly. ended up in A&E. I was a keen runner, 5-10k non stop runs most weeks...In A&E I was referred to a cardiologist/EP and straight away put on beta blockers and an anticoagulant. I was also CHAD score assessed, which is what you need to be ( You are over 65 ). Mine is currently 2. I have no issues at all taking any of my meds, in fact they are life saving as you need to reduce the risk of stroke which is what the anticoagulants do, so I feel happy that I am being treated with them....Best of luck, I can appreciate your concerns...Have a chat with your Dr
65 yrs old so ChadVasc score 1, I have also had to struggle with this decision, so can relate. I chose to try Apixiban, and no bleeding issues at all despite many scrapes (woodworking, skiing, mtn biking, trail running, pickleball etc). Due to eventual intolerance (worsening systemic hives), after discussing with EP/Cardiology/Pharm, I am now off them. I am keeping my prescription though for PIP, should AF return (none since May 31st ablation, after almost daily even on amiodarone). I would rather be taking regularly though, and will try again should my AF return (smartwatch ecg daily monitoring), weight or BP increase, maybe at 70 yrs old, or when activity level decreases (my father backcountry skied and hiked into mid- 80’s so here’s hoping!). Good luck with your decision, cheers!
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Another point to discuss with your doctor.
Getting off Blood Thinner
Natural Blood Thinners?
Anticoagulants described as blood thinners
Blood thinners from the first diagnosis or?
Blood thinners and cardioversion /ablation 
