Still doing great on Sotalol, so thankful for my new EP.
I went to a new primary care last week, and we discussed my AF briefly. He said "why aren't you on anticoagulants?" "My EP said I don't need it at my age and with how little I get AF." He then brought it up again a short time later, "you might not know how much you have AF" I told him, yes I do, I feel every PVC, and every AF acutely, talked about the devices I have also. Then he brought it up one more time toward the end. I should think about getting on anticoagulants.
I think I'll listen to my EP and not let you scare me.
Off to search for another primary for next time!🙄
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ChasMartin
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I remember a work colleague aged just over 60 who developed AF, he was put on to Aspirin and I said to him you should be on anticoagulants. His answer was, " I think I'll go with what the doctor has prescribed", so I didn't mention it again. The next thing I heard was that he'd had a blood clot in his brain and needed an operation to remove it. I was out walking around our harbour last year and bumped into him with what I would guess is a carer (he has a wife). He looks fine but his memory is vague.
Chas is under 50 but please, as we know a stroke can happen at any age even a teenager can have one. I would love to see him, reconsider and take an anticoagulant. Strokes are forever.
I'm 48, you can see this at the bottom of every post btw. CHADVASC2 is 0. I have a 30 minute episode once every 3+months, usually much longer between. There's no such thing as no side effects of anticoagulants.
I understand exactly what you are saying and I guess all pills may have side effects. I've had AF for 18 years and have always wondered if pills for slowing our hearts, also slow down the functioning of other organs in our bodies.
I helped run a nursing home for 10 years and have seen the devastating effects of strokes and I can only tell you that I will swallow any pill that will help stop me ending up like some of them, unable to move or speak and fed by a tube in the stomach - a living death.
My great aunt died quite young in her 30s of a brain aneurysm bursting. That's the other side of this coin. If I end up with one of those the anticoagulants could worsen the outcome. If the risk tips because I get diabetes, or AF becomes more frequent, etc, I'll reconsider of course.
Exactly!! As everything is divided anymore, this is also!! People need to have the right and the respect to make their decision for their own welfare , based on their own knowledge and research, research that some doctors will try to dispute even if they see it with their own two eyes. My NP continues to push this on me, her one and only reason being is that my afib may return after a successful ablation. Which of I am well aware of. She too seems very ignorant and not willing to listen to facts that surround strokes and these drugs. Disclaimer - I believe if someone chooses to be on them, than so be it, it is their chose and I do believe that there are those that should be.
Some doctors are very dogmatic when it comes to anti-coagulants (ACs) and forget that best practice medicine is a shared decision making process where everything is not black and white. I don't know your CHADS2VASC score, but I'm sure your ep factored that in. Also, there's your low afib burden, which while not figured into the risk score, should be according to some. Just read a study/paper somewhere pointing out the limitation of the risk scoring, where someone with one afib episode a year has the same score as someone in permanent afib. There point being that the risk is not the same.
Plus we could remind ourselves that landmark study on AF related stroke used a population who had persistent AF. I guess medics want to err on the side of caution. BobD often talks of Russian roulette in this instance but, the stats were based on a population that perhaps shouldn't be generalised across the board in the way it often is.
NICE have a series of graphs which are very easy to follow on their website which show risk of having a stroke for afib sufferers for all scores on the CHADSVASC .They also have similar graphs for the HASBLED score for the liklihood of a bleed. The graphs give the number of people out of a thousand likely to have a stroke for those who do and do not take anticoagulants. At low scores ie the 2 for being over 65 and a woman the difference in risk is negligable. Those who are the most " militant" here about the need for anticoagulation tend to be the lucky sods who don't get any side effects from them . What is more I think they engender worry in people who have to come off their anticoagulant for short periods for necesary medical procedures.
Not much financial incentive for the drug companies to do studies that might show that ACs are only beneficial to a selected afib population. Also, remember not every study is published, only the ones that the drug companies want to publish.
My husband has been on Sotolol for 12 years for his AF and does quite well on it.He was put on warfarin and then for some reason on a check up with a consultant he decided to take him off warfarin. Yes you've guessed it, he had a TIA the following year. Luckily he's ok and continues on warfarin.
The primary care doctor is correct. Do you have a device that can monitor your heart continuously 24 hrs a day ?
Even though you are young (48) he was correct as your primary care doctor in questioning the need for anticoagulants. As mentioned above, this is a "shared decision" between you, the EP, and primary care doctor.
I agree with you. It sounds like someone has not spoken to him about the reality of a fib, and how it does not improve, but will only get worse. He is only 48. I would rather see him on an anticoagulant now than end up with a stroke at 50. Anyone can have one. Does the primary know how severe the afib is? How often does he have events? Do you need a doctor that is a straight shooter? I learned more from here I think then my first doctor had shared with me. Since then I have been lucky and had doctors to make sure I know what I’m dealing with. Afib is forever. It doesn’t mean you will suffer with it every day everyone has it differently. Some barely has sometimes others like me cannot away from it? The bottom line is think about how stroke would affect you and your quality of life. Maybe I’m a coward, but it scares me. My uncle had one because of a mistake in medication while in the hospital. I watched him as he gave up on life. in his head, he was still him, but he could not talk and express himself so he would cry out of frustration. I know not all strokes are the same but I will take my little red pill every night and pray that it’s enough. Doctors are on different pages when it comes to a fib it seems , even as far as what medication you take for which part of a fib or a flutter. I was taken off a medication. I should have been kept on and put on the wrong one. Thankfully it didn’t hit me like my uncle had done but I suffered needlessly until I found my new EP and my new cardiologist. Many doctors will not say anything when they see a doctor his done something not quite right but thankfully my new doctors will speak out not to hurt the other doctor, but to correct and get us on the way to a quality of life we can be happy with
I agree Dawn, I have afib (very symptomatic but about 3 times a year at the moment). I am on apixaban and feel safer that way. My dear brother had undiagnosed afib he didn't really feel (although he was told years ago he had SVT) , unfortunately he had a stroke in January this year that has taken his left periferal vision. To see him change virtually overnight is heartbreaking. He has lost his driving licence and independence. He gets upset and it breaks me. Fortunately, he has no other physical disabilities but his mental health has deteriorated rapidly and he lives in fear of another stroke. He is now on apixaban.He only wishes he knew and had been given the option which clearly he would have taken
Gotta say, I KNOW when I do or don't have AF. Once it started I got very keyed into it. I do use a device but AF is very disturbing and my body tells me straight away. I realise it's not like that for all however
It is the same for me now, but I was clueless about a fib. I don’t remember going down either. I had gotten up to go to the bathroom and woke up with my cheek feeling cold. That is when I discovered I was facedown on my concrete floor. I guess in the beginning I had normal afib. I had two ablations. They were good, so I did not think much about a fib because it was well-controlled at the time. When it returned, it returned with a vengeance. I was very symptomatic, unlike in the beginning where it was mainly palpitations, etc. this time around it took away all quality of life. I will be forever grateful that my EP put me on an anticoagulant immediately. They say a clot can form within a matter of an hour or two. Think about if you injure yourself, how long does it take for to stop bleeding and clot? Before I got my pacemaker, I was told, I will probably be on an anticoagulant for the rest of my life and that is fine with me if it spares me from a stroke.
Much of our information that we share is the same no matter what country we are in. The only time I tend to get confused. Here is the names of your medication’s compared to mine. I’m always trying to figure if we take the same ones. Our health care of course is very different, even as far as how they do a procedure such as a cardioversion. For me, it was very private, and when I arrived at the hospital, I was the only person scheduled. I was treated like a VIP. They got me already and cozy even making sure I was warm enough as these begin to prepare me for it. I had a TEE first, they bustled around me in a very professional manner interacting with me the whole time. I knew everyone by name because they introduced themselves when they came in and explained what their role was. Jean had mentioned sitting waiting for your turn. It was thanks to her. I was not scared because she prepared me for it on this site along with some others. The unknown can be scary what I love here is that we all try to make people comfortable about what they are about to have done. I wish I had known all of you when I first started 2 1/2 years ago but thankfully I have you all here now. 😊
An AFib stroke is usually devastating according to my EP. Also a blood clot can form in the atria in less than two minutes and when the person goes back into nsr off it goes on it's merry way wrecking havoc
The issue is the atrial appendage - that's where the clotting happens. You can.get a procedure to close this appendix but it's not available to most of us.
Yes, forum is a lifeline in many ways. My diagnosis was preceded by 4 years of weird vasovagal events. I was just on the point of seeing my GP as I was starting to worry that it was in fact my heart. I'm lucky nothing worse happened. That said my.brother is not on anticoagulants because he's an alcoholic. Sort of functional but bad enough to get DTs when.he comes off it. He's had AF now for almost 10 years and is in persistent phase taking aspirin.plus Bisoprolol
I've done 2 Zio patches at this point, both for the maximum time of 2 weeks, and I am constantly monitoring my heart rate with my devices. I have a score of 0 on the CHADVASC2. Yeesh, I stepped away from this and came back and so many replies. Next time I'll be sure to add every bit of background information. I wasn't dismissing him for no reason.
You are young but a fib does not get better. I would much prefer to see you on an anticoagulant, then to see you have a stroke, which can happen at any age. Please reconsider. 🙏🏻
It's down to the Chad score that has been pointed out. I was only put on one when I got to a certain age.... I wasn't immediately put on an anticoagulant when diagnosed. For women they are more likely to be put on it earlier because you get a point for being a woman. From this I assume women are more prone to strokes if they have Afib?
my sister didn’t know she had afib. It was picked up on the regular reports sent back to the cardiology department via her pacemaker. She has no symptoms at all, it’s silent afib. She went straight onto anticoagulants once diagnosed.
As the singer Meja put it so beautifully, "Its all about the money, its all about the dum dum duh dee dum dum"
They do this to tick the boxes and cover their ass re insurance claims I'm sure. In the UK it's 'the statins conversation'...But your CHADVASC2 score is the gold standard and I'd be looking into that.
oh, how much I dislike statins. I definitely need a conversation about that with my cardiologist and EP. They are all afraid to have us stop taking them but the joint pain and muscle pain that they give me is so bad. I have spinal stenosis as well as chronic back and disc problems, and I am awaiting the clearance hopefully by fall to finally have my surgery for the final disk that was damaged in an accident. Are statins really that important or is it a big moneymaker? I see that some people believe anticoagulants are also a moneymaker, but I’d rather take them, than not.
I do wish arrhythmia doctors would get on the same page, especially regarding a fib and flutter. There are far too many different opinions, and there is help for us that not every doctor is aware of. The numbers are staggering when it comes to a fib and they expected to double upwards of 12 million people. My EP believes it is his responsibility to constantly keep up with what is going on so that he can fully take care of his patients. He is so passionate about quality of life and he wants to get us to it sooner than later. You would think that would be the goal of every doctor. We aren’t getting any younger out here. A month ago I could barely shuffle across the floor to do whatever I needed to do and I would be in pain and breathless etc. now I almost feel normal hopefully it’s just a matter of healing. Remember you have a right to evaluate what your doctor is doing and how concerned he is about getting you to the best place possible When it comes to life. If I had to stay where I was a month ago, I think I would well myself to go to sleep and stay there. Doctors should also pay more attention to the mental health because I think a fib does an awful job on us when it comes to depression .
Oh I hear you about AF. Yo -yoing between anxiety and depression. It's challenging! I think re statins- some people.so well on them- others not. I suspect if we have any type of autoimmune condition (and sounds like you do) then best put off as long as possible. I have hypothyroidism likely due to Hashi's so I'm not going there with statins
I have been on statins for a very long time. In fact, the same one, but I am going to speak with both doctors to find out if there is an alternative, or at least a different Statin that does not give me the body pain.
I meant to speak to my EP this morning about it but right now he wants to make no medicine changes. I will have an echo done next month to see what is going on with my heart failure. I cannot take anything over-the-counter or prescription from anyone else without clearing it through him right now. Thank you for mentioning that though.
Some statins are fat soluble eg Atorvastatin(Lipitor), and some are water soluble eg Pravastatin. I had your problem with atorvastatin then switched to Pravastatin and the aches and pains vanished. Maybe ask about that.
My gp was of the opinion that I didn't need to see an EP with afib. But I got my referral off her all the same, cos the look on my face said all I needed to say.
Consider taking a good quality CoEnzyme Q-10 for your muscle cramps. Statins deplete what we have of Q-10 and as we get older it's harder for the body to make enough so we need to suppliment. Dont go for any old cheap suppliment, do the research . I've talked to quite a few drs about this and they are not aware. Research it please.
thank you I actually already cleared that with my EP I use Qunol a highly rated liquid Max. My EP said it should actually make me feel better. He is also a fan of beets. I don’t have cramping as much is body pain with my whole body throbs. I have arthritis and spinal stenosis. I have a disk that needs a laminectomy. I was supposed to have it over a year ago, but when I arrived in Texas, my a fib had come back extra ugly and until I have cardiac clearance, nothing can be done. I also have extensive dental to be done because my first a fib event put me in FaceTime on my concrete floor. Thank you you are the first person to mention that. I do want to see people need to be careful and clear their supplements with the doctor. My cousin just had a terrible bout with high blood pressure that made no sense. I will tell you he buys every supplement known of I think well, he almost blacked out at work. They took him to the hospital. I could not figure out why this was happening. Thankfully he made an appointment with my cardiologist. They did the usual stress test at Cetera, his heart is it in great condition but he is on some medication‘s and he was on too much of one and it can even be the way that you take these things. Bottom line is things are readjusted and his blood pressure is gone from 190/110 to 113/70. our bodies can be such a delicate balance, and just like with a fib we are all different
Indeed..... As for statins - no thanks! I've been put under pressure twice to take them. My cholesterol is fine, BP great, weight fine..... But then theres Afib. If u have Afib they recommend statins on their little NHS scoring computer quizz....no one can explain to me why or what they will do for me..... GP said to me you will die of a heart attack in 20yrs....yeah but I'll be 86yrs by then said I... so what. So no thanks.
My point exactly!! I'd rather ENJOY the time Ive got left rather than waste away just to stay alive. If I can have another 18-20 years feeling as I do now (without the anxiety though...) I am Content
Both my GP and my cardiologist have told me “ One single Afib episode can cause a clot “. And no matter how many devices you have to check, unless you can wear one 24/7, you can’t capture all the ‘asymptomatic’ episodes. Even so, life is really a game of Russian Roulette anyway, and our individual approaches to risk vary from person to person. It does sound as though your risk is fairly low compared to many people, but personally, I wouldn’t want to take the chance of a stroke just because taking anti-coagulants is a bit inconvenient.
Advice varies from doctor to doctor and more essentially from country to country. Europe is much hotter on anticoagulants than US and having suffered TIA after coming off anticoagulants thinking I was ‘all clear’ of AF after 2 ablations - nearly 10 years on I now consider them my best friend so personally I’d listen to your GP and see another EP.
You might like to calculate your own risk factors here and then reconsider before you diss your GP’s advice.
I had the TIA 18 years ago despite being on Asprin for 10 years, if you have a stroke however small it affects your life, sometimes can kill you, often disables you. No second chance of being undamaged.
My cardiologist put me straight onto warfarin and now I have the new modern Apixaban which doesn’t risk as much with food etc and has a shorter life so easier to control.
Why do so many people worry about taking anticoagulants? It’s a life saver pill and so easy to do. Your risk is far more without them.
We are not doctors on this excellent forum so we can just share our own thoughts. It’s all a balance of risks and you are being given conflicting opinions by the medics. I would say this: a single episode of afib can cause a stroke with the consequences that could bring. Afib is unpredictable and can be symptomless. It rarely if ever goes away completely. The anticoagulants available nowadays are low risk and effective.
That's a bit disrespectful to the skill and knowledge of Cardiology possessed by an EP, which is vastly superior in that field to that of a General Practitioner.
Pretty disrespectful of the skills and broader knowledge and skill set required by GP's! EP specialise in one branch of cardiology i.e. he/she is an expert in the heart's electrical system that controls your heart rhythm, cardiovascular issues are a different subset.. bit like going to Manchester when you wanted to go to Leeds... both on the same motorway but different..
Not disrespecting anyone, they all fulfill a specific function (some better than others) but someone with a general overview has an equal or greater perspective on what is best overall for a specific person. If your EP happens to agree with your GP that's great... for you..
There are two types of stroke; those caused by a blood clot and those by a brain bleed - the risk of which is increased in those taking anti-coagulants.
Hence the 'Chad' score which balances the risk either way according to statistical information.
To add to this, my EP, whom I trust implicitly, says that the statistics on AF-induced stroke (5x increased risk) do not take into account the various types of AF sufferer.
The incidence of stroke is vastly reduced in those with what he calls 'fit AF' - those with lone, vagally-induced AF and a decent level of fitness. That best describes me, so I won't deliberately increase my risk of suffering a brain-bleed stroke until it is outweighed by the risk of blood-clot stroke. At 48 and assuming no co-morbidities, the OP would be wholly justified in deciding not to take anti-coagulants.
I'm sorry you suffered a TIA, but as I know numerous people without AF who have had this condition and indeed full strokes, including some very fit ones, may I ask how the medics who treated you were able to establish that a clot had formed in your heart, caused by your AF, which then travelled to your brain?
I was in AF at the time which they caught on the ECG, the symptoms of not being able to talk properly, lopsided arms and face. They tested for other sources including scans of the carotid artery but ruled those out, so only thing left was the heart. Fortunately it cleared within 20 mins. I was on aspirin, but as we know, that's useless. I went straight onto warfarin which I've been on ever since with no further problems 🤞
It's obviously good that your TIA was detected where and when it was and in your position I'd want to be on an AC too.
However in weighing up the risk versus benefit of any medication, governing bodies must listen to the weight of evidence across hundreds or even thousands of people, and not be distracted by the inevitable individual cases which may contradict general trends.
You're right to add your experience to the discussion though, and yet again it illustrates that we AF sufferers may have a common enemy, but the symptoms and circumstances of the condition are as individual as each of us, and we must each find our own best way to act on the available information.
Some of us are lucky enough to know when an AF episode starts but what then? You can't take an anticoagulant as a pip and it only takes one attack to cause a stroke.
Not quite sure why you'd knock a Dr for pointing out the risks of something as I would have thought it's a key part of his job. Absolutely your decision at the end of the day but don't have a pop at the guy for doing his job.
I'm having a pop at the guy, because I tire of the bickering between doctors. One is telling me I have absolutely nothing to worry about, I shouldn't even think about getting an ablation anytime soon, and don't need anticoagulants etc. Then some new one comes in and goes you're going to have a stroke and should be on anticoagulants, and then continually repeats himself after I tell him I've been evaluated for them already. Give me a @%##&#(* break. That's the point.
My ep says I need a pacemaker.fears I may pass out.fall..6 sec pause after booster.dont know if more pauses.how long.have a loop.. I resisted..talk about scared
once again you ARE being judgmental. We have not ALL been conditioned to think if someone is still wearing masks especially in their profile photos then they're actually still feeding & supporting this narrative of scaremongering. Which has absolutely nothing to do with this post by ChasMartin.
I consider Eliquis to be the most important medication I am taking. I have PAF, quite well controlled at this time. BUT, looking at the graph for "resting heart rate" that my watch will generate, I can see from the HR that I am still having occasional, short AF episodes at night, while asleep. (Resting HR going from ~60 to 130) So every morning and evening, I make sure the 5mg Eliquis is in the mix!
I was interested to read the replies to this as I had asked a similar question when I was first diagnosed with AF in November last year. My CHADs Vasc score is 1, simply by dint of being female. I’ve done a lot of research since.
What I’d say is that the CHAD -Vasc score is there for a reason. It weighs up an individual’s risk of stroke. However, not all factors are equal and research shows that AF+diabetes carries a much higher risk than AF+being female, despite both scoring a broad brush 1. Add to this the AF burden which hasn’t been taken into account to date.
In short, the CHADS-Vasc score is there for a reason but it has to be balanced with the HASBLED score. Because taking an anticoagulant is not without risk. It is not about your finger bleeding for longer. It’s this: “Intracranial bleeding is the most feared complication of oral anticoagulant treatment (OAT). Intracerebral hemorrhage (ICH) accounts for the majority of OAT-associated intracranial bleedings (46–86%) and has the most unfavorable outcome, with mortality rates up to 67% and severe disability in the majority of survivors.”
So it’s a serious decision which needs weighing up by all medical parties, but very much depending on individual circumstances.
You may very well know when you are in AF while awake, do you have a device that captures 24 hours? I'm not sure why you are deadset against AC but it is a risk not to listen to your Dr's advice.
I ran into that also when I tried to get cataract surgery. BTW, still waiting on that. The nurse wouldn’t approve me because I was not on an anti coagulant. I sought out a new cardiologist EP, and he he said since I am under 75 (73 is my age) and because my Afib doesn’t last over 12 to 24 hours I didn’t need one. We will evaluate again in a year.
Really surprised by the amount of comments here when I came back today. I have a CHADVASC2 score of 0. I AM constantly monitoring my heart rate, the watch checks it all the time. I take EKGs if anything is off and I take them randomly multiple times a day because it only takes 30 seconds. I have also had 2 different Zio patches with 2 weeks straight of monitoring. The first one caught nothing at all. The second <1% AF as I had 2 short episodes, both of which you could see in the report I pushed the button on it because I feel it every time.
I know these devices are new.
To the person who said I shouldn't avoid taking it because it's a little inconvenient, as though I just don't want to take a pill. I think the side effects are a bit more than "inconvenient".
I'm 48, you can see this at the bottom of every post btw.
If I have a 30 minute episode once every 3 months (many times longer between episodes), seems to me it may be a higher risk that something happens with the anticoagulant that I'd be taking daily.
Remarks like that about inconveniece or " what's the problem with taking it?" are usually made by the people here who have no side effects, or trivial ones like brittle nails and who do not seem to think about the possibility of haemorrhagic stroke . They repeat the mantra about afib ischaemic strokes being very bad - well they are probably no worse than haemorrhagic strokes which are very difficult to treat. I have an extremely " inconvenient " side effect from Apixaban. The full dose gives me appalling back pain and increases pain in my other joints. I get "inconvenient" side effects from all painkillers like bloating and digestive issues . I am sure if I was to take them daily that would increase my afib episodes. So vicious circle. Decisions about medication are not simple for everybody .
Remember no GP wants to be accused of NOT giving you the anti-co-agulant.
I had a Stroke but although caused by AF it's underlying problem was thyroid cancer.
I was in Whangarei Hospital the main Northland DHB. I was discharged day 4 and transferred to a minor DHB closer to my home.
Discharged with my team prescribing 110mg PRADAXA twice a day.
But not seeing a Dr but therapists for services put in place, I was discharged after w/e and Tuesday discharged with 150mg Pradaxa twice a day. As I was not consulted I didn't see the difference until 2 years 3 mths.
I put the discharge papers together.
I rung my Locum Dr who said "Leave it Joy". I said "no way." I was then almost 73 with a heart condition.
I wrangled with her determination not to change my prescription! In the end she said "I will put a note on your prescription that YOU have wanted this lower dosage".
I changed Drs and this one in her 80s said "I agree you should be on 110mg x 2".
She took the notice off my prescription.
This new Locum Dr has had AF herself, had an ablation in Australia. As I continued
to be not controlled with a high day avge H/R, referred me to a private heart specialist who introduced a CCB Diltiazem a Calcium Channel Blocker.
It dropped from 156 to 51 some 105 H/R in 2 hours.
Twinked the dose to 120mg AM with 2.5 Bisoprolol PM. Bingo.
Your choice ultimately. The DHB I saw last June checked my usage of PRADAXA and
3 times accused me of not having PRADAXA since April. Except I had an op in March and taken off it for a week. Picked up another script in May unlisted.
I was peeved off that he don't believe me.
I got a copy and put it into my file as he spoke about missing it in his report. I was angry.
Apparently these things happen.
Also refusing to take Metroprolol by the Stroke Ward Dr who was a Endocrinologist was ignored and still given it and yes it made me breathless, fatigued and showed my heart pausing 2 times for 2 second during the night.
I state that I manage my own heart after listening to you, online research and ultimately choosing what I wish to do.
There is research saying if you are not in an AF episode, it advises not to take the anti-co-agulant daily.
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Ablation and anticoagulants
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A Way Forward
