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AF Association
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What does AF feel like, and when should you go to a hospital?

Hi everyone, my mum was taken into hospital yesterday and diagnosed with AF. She has always had SVT, which she calls "flutters" or "stumbles" to describe an unusual heart pattern that only lasts a few seconds. When we called the ambulance, she felt like her heart was beating out of her chest, in an uneven pattern, with a heart rate around 140.

She got beta blockers to bring the heart rate down, and Elequis to thin her blood in case of a stroke. When she was discharged, she felt totally normal, but the doctor said "Come back if it happens again". So when, on our way home, she felt faint and her heart started beating unevenly, we went back - but the nurses were supremely unconcerned, and seemed to think there was no problem.

We just can't figure out when symptoms are serious enough to merit a trip to the emergency room. I think AF means 'uneven heart beat', but she's been having that all day today (she describes it as "fluttery"). Is that just something she has to live with (until she gets the ablation?) Under what circumstances should she go back to the hospital?

Thank you :)

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(AF is an irregularly irregular heart rate and may also be fast - or sometimes slow too)

Many of us worry about when to go to hospital and I don't think there's a hard and fast answer to this. However if your Mum actually faints, has chest pain or a heart rate as high as 200 for more than a short period of time then I think you should definitely go to A&E.

Strictly speaking AF is neither an accident nor a life-threatening emergency (even if it feels like it at times!) and many forum members will sit out an episode of AF at home using relaxation techniques and deep breathing to deal with the unpleasant symptoms.

In my own case the first two times I had an AF 'episode' I was sent to A&E (1) by a nurse who just happened to be standing by me when I fainted and (2) by my GP when I staggered into the surgery with a HR of 200+. Subsequently no episode has been as dramatic and I have just sat things out at home.

It's hard, I know, especially when initially diagnosed with AF to know what to do for the best but with a good treatment plan in place (edited to say it's good that she is taking an anticoagulant and a beta blocker) and a little more experience of the condition things do get easier. If the AF continues for more than 24 hours it may well be that the beta blocker dosage needs to be changed, but her GP could deal with that.

If all this is still new to you and your Mum then do go and read all the patient info. on the AFA site here:

heartrhythmalliance.org/afa...

If you have further questions then do please ask.

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Thank you, that is really helpful! We will check out that website too.

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Hi Katiescarlett78 - I’ve just been watching some useful videos on the Get Smart About AFib Facebook page too. As September is AFib Awareness month they have done a couple of interesting interviews with doctors and patients and also show you around a cath lab and discuss ablations. It is US based.

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Oh, brilliant! Mum is right this minute watching some videos on the AF Association website, I'll pop the Facebook link over to her as well :) Thanks!

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Knowledge is Power 😉

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Oh absolutely! When I was diagnosed with ulcerative colitis, I spent about a month sick in bed, reading up about it, and felt so much less scared afterwards. Going to help mum do the same :)

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Yes I’ve learnt an awful lot about the heart in the last 2 years. So much so that when driving recently, listening to a medical segment with a cardiologist I was telling the caller (in my head) what he needed to do next and it was basically word for word what the specialist said, including listing the other anticoagulants he could try 😜

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Haha excellent! That's why I'm asking questions on this forum; people with the condition often have better advice than doctors, because they have the medical knowledge AND the personal experience. Thank you, I really appreciate your help :)

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The Facebook page is good - thanks.

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You’re welcome 😉

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Firstly AF is an irregular irregular rhythm caused by rogue electrical signals in the left atrium. When it is paroxysmal (comes and goes) people feel their heart like a bag of worms in their chest.

There are no hard an fast rules but here in UK "Emergency Room" is called A and E -- Accident and Emergency and AF is neither. It is a chronic condition and needs to be treated initially by cardiology in order to set up a suitable treatment plan and then just move forward day by day.

AF is not generally life threatening BUT if chest pain or fainting are experienced then medical attention should be sought.

You must also understand that ANY and All treatment for AF is only ever about improving quality of life (QOL) and that includes any possible ablation which may or may not be appropriate.

The most important thing is that she is anticoagulated to help prevent stroke which is the prime risk with AF . I do not like the misnomer "blood thinners" as they don't!, They merely slow down the clotting process. Beta blockers are known as rate control drugs and slow the heart during events but do nothing to control AF unlike some rhythm control drugs which a rhythm specialist called an electrophysiologist may prescribe.

May I suggest that you go to AF Association website and read all you can as knowledge is power.

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Thank you! Yes, she is visiting me in the US from the UK, which makes everything a whole lot more complicated - the doctors were like "You definitely need an ablation! We can do it if you like!" and I thought 'yes, I'm sure you'd love to get that $50k'" ;) We have a lot of reading to do, and I'll certainly go to the AF Association.

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There is no such thing as standard AF and a few people have a wild variety that needs hospital intervention and most of us soon learn what goes on and can deal with it without any professional input. Some people control it with daily medication, some just use medication to stop an episode and some opt for ablation hoping to get rid of it or improve their situation.

It must be difficult for doctors and nurses to get to grips with it because the range is so wide - slow AF that's there all the time, very fast for a short time and self terminating, moderate AF that lasts for a few hours and responds well to medication and all things in between.

It's hard to say what AF feel like. Patient perception varies from very symptomatic to not aware of what the heart is up to. For me, it's as if I've just had a near miss in the car. My heart is fast and a bit wild and I feel slightly shaken but function almost normally. I don't have any breathlessness but I think many do.

Some of us can have frequent little episodes, others can go weeks in normal rhythm and just have the odd very obvious wobble. There is no norm and most of us become expert in our own brand - though AF tends to change and develop.

Currently your mother and her doctors are on a voyage of discovery, determining what medication works for her and the best ways forward and there are several options.

Incidentally, she'd do well to ask for a copy of any ECG that gets taken and consider a personal ECG recorder like the Kardia.

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This is really informative - thank you! I'd never heard of the Kardia.

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You will find plenty of information here about the Kardia if you use the search facility at the top.

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Great, I will!

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I was advised that if the heart was beating at more than 100 for more than 20 mins to call for an ambulance. They said to take an extra tablet if the heart beat rapidly which would slow

it down. However, as your mother has only recently developed this problem the hospital should have discussed this with you. I would give them a call today, or at least your GP.

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Whilst waiting to see a cardiologist after initial diagnosis in A&E with fast AF at a rate of 140-165, I too was told by several GP’s to go to A&E with a HR of over a hundred. When this happened, feeling faint & generally awful, A& E were not interested as my heart rate was running in the 90 - 120 range and was in normal sinus rhythm according to the 10 second ECG and a few manual pulse checks. They decided not to even monitor me continuously for a few hours (I’m sure I was going in & out of AF). I was anxious about the effect this could have as I was then on no treatment at all, having been advised to stop Bisoprolol as it reduced my HR to the low 40’s and not being anticoagulated as my risk score was only 1. The nurse practitioner on duty assured me that ‘ your heart won’t form clots unless your heart rate is over 140 for 24 hours’. I have since read on this site that clots can form in some cases in only a few minutes.

I now have a BP monitor which also detects AF ( There are several out there including Boots & Omron - must be one that states it can detect arrhythmia). I’m not obsessed with it, and only use it when symptomatic.

Having seen the Cardiologist, I now take Flecainide 50mg twice daily with the instruction to take an extra 50mg if I get a breakthrough episode of fast AF, and I’m also on Apixaban 5mg twice daily as I’m within a few months of my 65th birthday which would put my risk score up to 2 and the Cardiologist felt this was safer for me. There are several medical reports on this site that tell you GPs have been shown to underestimate the risks of stroke in AF and overestimate the risks of bleeding on anticoagulants.

I have recently come across friends with AF who I know have a risk score of at least 2 as they are female and over 65 and are still taking aspirin as they were diagnosed pre 2014 when the NICE guidelines changed. I wonder how many more are out there?

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This sounds very similar to my mum's experience, thank you for sharing! Getting a device to detect arrhythmia is a great idea.

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I suspect that doctors are aware that if everyone with AF called an ambulance or went to A and E whenever their heart was beating rapidly for over 20 minutes, the service would be overloaded. Therefore they temper what should ideally be done with practical considerations. You could ring the British Heart Foundation and speak to one of the cardiac nurses there to see what they have to say, although this should really be the responsibility of the hospital. It seems to me that knowing under what circumstances to go to A and E is a very basic question, yet patients are not always being informed about what to do. Until the situation has been clarified, you should err on the side of caution.

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Thank you! It seems that American Emergency Rooms, despite being paid handsomely for their services, are still reluctant to be helpful :(

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Hi

Not a straightforward question! SVT is a generic term for an abnormal rapid heart rate caused by electrical impulses originating from somewhere in the atria. It is possible that your Mum's Paroxysmal Atrial Fibrillation is a worsening of a pre-existing condition.

Given that your Mum has a new diagnosis of PAF and has only recently been prescribed beta blockers you should probably have a lower threshold for calling emergency services than with an individual who has more "controlled" PAF. I have had PAF for ten years and I think you develop an awareness of when you are in trouble and need expert help although everyone is different.

Symptoms that should give cause for concern include shortness of breath at rest, central chest pain or tightness particularly if this radiates to your mum's arms or into her neck , extreme dizziness or fainting, a heart rate in excess of 150 for longer than an hour.

PAF is a complex phenomenon that can have multiple causes and trigger factors and can be extremely difficult to treat effectively. Your mum may need trials of different classes of medication and ablation is not generally first line treatment. There is no miracle cure!

If your mum is having frequent episodes and this hasn't happened already I would be pushing the GP for an urgent referral to a cardiologist with a particular interest in electrophysiology.

From personal experience PAF is very distressing and frightening but it is very rarely life threatening.

I wish your mum all the very best and reassure her that in the majority of cases PAF can be brought under an acceptable level of control

I hope this has been of some help

Kindest regards

David

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This is really helpful - yes, the doctor did diagnose specifically PAF, I'd forgotten that. As soon as she gets back to the UK, she will see the cardiologist who diagnosed her SVT. Exactly as you say, she finds it very distressing and frightening, but it's reassuring to know that people bring it under control and get sort of used to it. Thank you :)

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I had SVT and wore a ten lead cardiac monitor for a month after almost fainting on a train. My blood was not moving on. Monitor revealed sometimes it kept looping around and high risk for stroke and or heart failure. I decided immediately to have the fake node ablated by EP. Finding out exactly what the cause is assures appropriate treatment. All the best. Hock

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Thank you! The cardiologist only gave her a Holter for like three days, which was useless because she didn't have SVT during that time :(

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