AF Association
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New to AF. And worried about drugs

Hi all, just had 2 days in AF after a bad reaction to a drug. I vomited all day, until I decided to go to a & e to get some anti-emetics as my heart had started pounding. I flipped back into normal sinus rhythm but now I'm told I'll be on anti-coagulants for life just in case. I'm really upset about this. I don't know what to do? Or how I go about getting second opinions or further advice??

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Hi Paula :-) welcome. I think many of us share your reaction at being told we may be on anti coagulation for life. I was until I read this from the Stroke Association , it made me realise I might be one of the lucky ones who's symptoms were eventually recognised in time...

''• The risk of stroke increases five-fold for people with AF.

• AF is a contributing factor to 20% of strokes in England, Wales

and Northern Ireland.

• Men have a 1.5 times greater risk of developing AF than

women.

• However, AF-related strokes in women are more devastating

(ie. greater mortality) than AF-related strokes in men – the

reason for this is not currently known.

• The incidence of AF increases with age – you are approximately

twice as likely to have AF for for every decade after 55

• It is estimated that if AF was adequately treated, around 7,000

strokes would be prevented and 2,100 lives saved every year

(England only).

• Only 4 in 10 (41%) stroke patients with known atrial fibrillation

are on anticoagulant treatment on admission to hospital in

England, Wales and Northern Ireland.

''

stroke.org.uk/sites/default...

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Very interesting doodle68 .

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All the docs seem puzzled. I work in a hospital. All who know are shocked as I'm so active and fit. All think it was the drug but the cardiologists feel they have to be cautious. I don't want to accept it, or take drugs for life if I don't need to.

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Read all you can on AF website look at NICE guidelines and make informed decisions. I don't want meds for life and was v fit before but if the meds keep my heart in reasonable state and my pacemaker I choose meds. Anticoagulants no brainwork stroke or meds? I choose meds

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Thanks for this. I only got out of hospital yesterday and I'm over thinking everything and struggling to accept it. I've felt a couple of flutters in the past so maybe I do have the condition. I'm only 49 and fitter than most half my age. It's all a shock, but maybe things happen for a reason. Maybe this event was my saving grace. Thanks for replying. P

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Often lots of exercise can make us more likely to develope AF also not everyone is aware they have it

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Yes I believe so. And cyclists are the worst...which is my biggest passion, though I've never had any problems exercising. Just when I took this drug!

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I too am 49 and it was a shock and struggle to accept the news that AF will be with me now forever but I am great full it was diagnosed when it was and that knowing gives me amunition to fight it as they say knowledge is power, I feel I am now I am master of my own destiny.

So stay positive would be my advice.

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Dear Doodle68, I'm confused about this: "Only 4 in 10 (41%) stroke patients with known atrial fibrillation

are on anticoagulant treatment on admission to hospital in England, Wales and Northern Ireland." Does that mean the 4 people knew they had AFib and are on an anticoagulant, still had a stroke??? Sorry for the confusion. And Paula, find a good EP. I know I am going to go to one for a second opinion myself. I am taking Warfarin as I do not want to have a stroke. That has always been one of my biggest fears. Good luck to us all!

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Mine too. The one thing I always said I wouldn't want! Going to see what the medics/cardios say in the next week or so and see if referral to an EP is my best option. I have a holiday booked in 7 weeks and fear going anywhere now!

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Good luck to you! Please keep us informed! Hugs!

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Just to be clear, you said you went into AF after reaction to a drug. Is this the only time you know of that you have gone into AF?

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Yes

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Please don't worry.

I have been on AF drugs for >25years including Warfarin for 10 years.

Still here to tell the tale.

Not ideal but as you see from doodle68's post it is the lesser of the two evils.

You will get a lot of support from this forum.

Pete

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Well you need comments from more experieced people than me but I am surprised that if this is the only episode you know of, and it has a cause that you can identify (the reaction to a drug), then I'd be definitely seeking advice from a specialist before commiting to life-long anticoagulants.

EP's (electrophysiologists) are the experts and I'd be seeking a referral to one as soon as.

Koll

PS. Been on anticoagulants for many years with no problem.

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Thanks. I will look into it

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I agree totally with what Koll has said.

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Hi Paula :-) did anyone talk to you about the CHADSVAS score,

chadsvasc.org/

Now you are home and hopefully feeling better I would go and have a chat to your GP who will know about your general health and should be able to reassure and advise you...

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Hi. Thanks for this. No-one has discussed anything with me. Literally 10 seconds with a cardio to tell me I can go home but start taking meds. That's it! Returned today as I was stressed and wondering how long I'd be taking anti-coags to be told it was for life. Consultant I worked with said 3 months max as it's a known cause. I need to get second opinions!

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Paula with you age and being female if you have no other cardiac issues, diabetes or high blood pressure your CHADSVASC score is 1 and as such would not be recommended anticoagulants . Please look up CHADSVASC and do your own assessment . If you are a score of 1 then no anticoagulant needed unless you want it. This would change as you get older.

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Thanks. I'll look in a mo and speak to the medics! My natural bp is 102/60, and natural heartrate around 53.

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I recall being in hospital when AF was detected, and the Registrar said that people who are unwell can have AF even if they didn't normally have it. They then gave me an Amiodarone drip that within the month placed me near critical.

You have bradacardia through cardio fitness and you may get exercise related AF in the future like some of us cardio and gym bunnies, but this seems early in life to be committing you to anticoagulants.

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I agree completely. It seems to be insurance for them rather than what is right for me!

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Although I have had AF for many years I had never heard of the CHADSVAS score. I was put on Warfarin in advance of an AF ablation also many years ago and the scoring has never been discussed with me.

Mind you if I did do the test no doubt I would qualify.

Good points made by others that if you are young and have only had one episode then you would be well advised to ask lots of questions before agreeing to a long course of anticoagulants.

Pete

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Hi Paula,

I am 42 and diagnosed with Afib 2 months back. I was put on beta blockers and anticoagulant at emergency. I was very depress like you and was not happy to take these meds for rest of my life. Surprisingly, I met my cardiologist just a week ago and he has stopped all medications. He told me to keep an eye on pulse, BP and maintain a healthy life style. Exercise in moderation and eat heart healthy food. If Afib is back "Let it happen, I will send you for an ablation procedure"

I felt great after that visit and stopped apixiban and started tappering off betabloacker.

I hope that Afib will not come back!!!!

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Excellent. Thanks for your message. I'm calming a little. Not depressed by any means but concerned as no investigations have been done. I've ensured I get an appointment to have more investigations, so we have a clearer picture.

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I'm not sure about UK wait times but here in Canada they did Echocardiogram and holter monitor for me immediately after AFib. My stress test is in 2 days, hoping normal. I have also requested CT angiogram. My cardiologist first did not agree but I told him for peace of mind and he agreed.

Good luck for your investigations and hope normal result.

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I don't know where you live in Canada, but my "wait time"for an echocardiogram and Holter Monitor is over three months in Western Canada. For an ablation it gets worse: from booking three to six months and beyond.

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Paula, I went undiagnosed with AFib since my early 40's. They are much better these days at picking it up. I wish they had picked it up ages ago.

My mum had Afib and was on Warfarin for more than 30 years. They took her off the drug and she stroked out and died within 2 weeks. Having also watched my dad die of stroke I actually felt relieved and protected when my EP said I needed to be on Apixiban for life.

AF isn't a killer, but stroke is.

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I know that's why I haven't refused to take them. But I have no history of it in any of my family. Nor for me. I'm a 'special case' they have said. They're all confused at the moment. I reacted to a drug. I don't see that as a reason to think it will happen again. The drug is not popular with doctors yet it's still prescribed! We will see what my investigations show.

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Hi Maggimunro, Do you have a paroxysmal Afib?

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It was mentioned when I left but that was when I was trying to flip back to sinus. I need follow up ecg to ascertain that. Hopefully this week

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Yes, although I had slipped into persistant A fib before my second ablation for A Fib 6 weeks ago. Since the op, I have been free of A Fib. Yipee!!

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So are you off all the medications now?

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Just Apixiban for stroke prevention. I couldn't tolerate the anti-arrythmia drugs.

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Fantastic news. Did you get migraines following the ablation??

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Not at all, but I'm not prone to headaches as a rule. I still get a flutter if my adrenaline levels go up, like this evening when I had some wonderful news. That I can live with!!

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Make sure you are referred to an EP who is an expert and will give you proper advice. You may not need to be on anticoagulants for life.

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