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Atrial fibrillation

What having atrial fibrillation feels like

We asked people to describe what having atrial fibrillation (AF) feels like. Palpitations (a noticeably rapid, strong or irregular heart beat) and a fast pulse rate are key symptoms associated with AF. People described unpleasant, ‘alarming’ and sometimes very unexpected heart sensations. They spoke of their heart ‘beating very fast’, and their pulse ‘running very fast or very irregular’, using vivid language to convey how palpitations feel. They described a fluttering in the chest ‘like butterflies’; ‘like you’ve got a ferret in your chest’; and ‘a bird in there jumping around’. Some described a feeling that ‘your heart is too big for your chest’; and a bizarre, uncomfortable feeling ‘like your heart is going to jump out of your chest’. Richard, Gail and George Y found their physical symptoms more noticeable when lying down. Pauline suggested it was like running a marathon but where ‘you’ve stopped but your heart is still going, and no matter what you do, it’s not calming down.’ For some, symptoms prompted a comparison with a heart attack and fear of dying.
 

Elisabeth X, in permanent AF, described her symptoms as a ‘cardiac neurosis’.

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Age at interview: 74
Sex: Female
Age at diagnosis: 30
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Just this awful, I don’t know, feeling that your heart, it sort of almost feels as if it’s far too big for your chest. And it’s making this terrible, terrible and it’s very frightening. I mean the phrase cardiac neurosis comes to mind because you really do think you’re going to die. It’s horrid. You know, I would say to anyone who’s starting out with AF, it will feel horrible. It will feel really scary.
 
I suppose I get used to it in the way that anyone who had a false leg or a, they’d be used to it but, at the same time, they’d know it was there wouldn’t they. I am used to it, yes, because I’ve had it for so long but I know it’s there. And sometimes it makes me start to cough because I, there’s this funny sensation as if there’s a lump there or an obstruction and so you want to cough and get it out of the way. But it isn’t an obstruction. It’s your own heart misbehaving.
 

For David X, episodes of AF are ‘totally consuming’ and disorientating. Fear is a natural reaction.

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Age at interview: 73
Sex: Male
Age at diagnosis: 61
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I can only speak about how it affected me. It affects people differently, but as one person put it at a conference, you feel as if you are dying. There is no way you can operate. It is totally consuming, the feeling that you get. Yes, that you’re floating off into some sort of outer space somewhere. And that you just cannot function. You cannot think properly. You cannot think logically. You’re completely disorientated and you have to fight for every sane action. It’s profound. 

Far more than just a physical sensation?

Oh, yes, it affects everything. Well, it’s obviously the brain reacting to what is going on. One of the things is, what is happening to me and, therefore, the rise of fear, which is a natural reaction to any human being if they’re experiencing something that’s totally alien. And then it’s a question of how do you react to the fear? How do you control the fear? I’m a Christian and, therefore, I prayed about the situation and the fear was taken away, but the effect on what do I do next? How do I make a logical decision? How do I make any decision? And is the decision I make going to be effective? All these things are going around in this swirl of disembodiedness. It’s a horrible experience. 
 
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For Jeni, palpitations could be uncomfortable and painful.

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Age at interview: 41
Sex: Female
Age at diagnosis: 40
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It feels like your heart is going to jump out of your chest. They can be uncomfortable. They can be painful. I can imagine most people get quite scared because, to some people, that they’ll think, “Oh, I’m having a heart attack.” You can get breathless. If it’s a small palpitation attack it’ll just be, “Oop.” And it’ll just sort of beat for up to ten minutes quite hard and quite quick and it feels out of synch, your pulse will race and you might feel a bit dizzy and light headed but if you’re having a major attack, it really does feel like it’s coming out of your chest. You can feel sick. You can feel sweaty, very dizzy and you can get chest pain, which is why sometimes it presents like it’s a heart attack.
Yet while palpitations were part of the experience for many people we interviewed, this was not always the case. Dave, who was diagnosed with AF after feeling unwell while scuba diving, explained that he had never - as far as he was aware - ‘had palpitations, or pain or anything’. Paul reported just one symptom, a pain in his back, when he was experiencing an episode of AF. His doctor and his cardiologist dismissed this as being unrelated to his AF. 

Tiredness and exhaustion were particularly common symptoms. People spoke of feeling tired, ‘drained’, dizzy and light-headed. Brendan wondered whether his tiredness was ‘a function of age or a function of the disease’, as did Richard. (For more see ‘First signs and symptoms of atrial fibrillation’).
 

Richard was unsure whether his tiredness was part of ageing or related to his AF.

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Age at interview: 56
Sex: Male
Age at diagnosis: 52
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It’s hard to know if it’s the disease or, you know, because it because it all happened round when I was about fifty, now I’m fifty six. You know, that age anyway things are changing without a doubt and you’re not very sure if it’s just a natural you know, consequence of being fifty odd, and most people, you know, things seem to change a bit around there, I would say, not everybody but a lot, or is it because of the disease. And all I can say is I’m definitely more tired than I was before.
 

Raymond, who went on to have a pacemaker fitted, spoke of passing out (syncope) when he had an episode of AF.

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Age at interview: 78
Sex: Male
Age at diagnosis: 64
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When I had an attack, I knew it was coming. I had not very long, just a second or two but I knew it was that was the beginning.

It was in [hospital] and I sort of felt it happen and I wakened up and I was sliding down the door post, I had my back against the door post and I was sliding down and ended up on, that was the end of it then. Can’t remember any more problems. Probably didn’t say anything to anyone about it because I was going home and I wouldn’t have been going.
Some people felt unable to carry on with what they were doing and had to lie down when they had an episode of AF. Dot, however, spoke of trying to ‘ignore it as much as possible and carry on’ despite her symptoms: ‘I will not let this thing get the better of me’. Anne said that for a couple of days after an episode, she would feel like she was recovering from an illness. Roger felt that he was in a body older than he really was, and experienced an ‘intense tiredness’ that felt like ‘being stuck in second gear’. Some people we interviewed related these symptoms to a heart ‘trying to beat too fast all the time’. Reflecting on the amount of work her heart had to do now that she was in permanent AF, Nuala has taken a softer approach: ‘whereas before I was really blaming it, I thought, “Right. I’m going to treat my heart well and rest when it needs to be resting because it’s doing a hard enough job”’.
 

Feeling constantly tired and exhausted, Glyn described how he was unable to continue working as a cleaner.

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Age at interview: 64
Sex: Male
Age at diagnosis: 56
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Eventually, I found a job of part time in one of the stores in [city]. It was just a morning cleaner really, four hours a day, eight until twelve, that’s all I was doing. But as I say, even that I was finding hard, the last couple of months I was there because I used to work say an hour, an hour and a half and I’d have to sit down again because I’d feel exhausted. That’s one of the symptoms of AF unfortunately. You feel exhausted and tired all the time through it, you know, because what happens, when you get an attack of AF, it takes so much out of you because your heart is a natural pacemaker, trying to get it back into sync. When it does go back into sinus node it means that, you know, it’s take so, it’s just like running up a hill. You run up a very steep hill, you feel tired and breathless. It feels exactly the same. You know, you feel so exhausted after it, after an attack, you know.
Some people also described breathlessness, a tight-chested feeling, nausea, clammy skin, cold extremities (e.g. hands and feet), and chest pain. For Chris Y, breathlessness felt ‘as if someone has withdrawn the air from my lungs’.
 

Jo described the pressure and dizziness she felt when having an episode of AF.

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Age at interview: 64
Sex: Female
Age at diagnosis: 53
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You’re aware of your heart pulsating and it puts pressure right round about your waist. That’s where I feel most of the pressure. Sometimes it goes through to my back. Sometimes it’s up my arms. It makes you feel dizzy because the oxygen isn’t getting round the body. And you very often have cold extremities.
 
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George X experienced pain during an episode of AF.

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Age at interview: 78
Sex: Male
Age at diagnosis: 63
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Phew, well, if you get a bad attack it is very, very bad. You start off by having difficulty in breathing and then you get a pain in the chest, which goes right the way down on my left side into my thumb, in fact. You can feel it all going down there and it comes up into the neck and sort of stops at the chin. That’s how it affects me. And then as you try to get your breath, it’s almost as though you’re, it’s an odd feeling. It’s almost as if you’re breathing into, struggling to get your breath into nothing. There’s nothing there and you’re, [heavy breathing] and it’s just like a big empty chamber. 
Breathlessness could curtail everyday activities. Janet, who lives by the sea, described how she had to ‘stop about half way’ to get her breath when climbing up steps from the beach on her daily walk, and Vera had to rest for a few minutes while showering or ironing. (For more see ‘Impact of atrial fibrillation on relationships and leisure time’).
 

Dave spoke of his friends’ reaction to his breathlessness.

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Age at interview: 61
Sex: Male
Age at diagnosis: 50
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I get breathless and that’s the main symptom. I just don’t have enough oxygen to do what I want to do I think it’s the thing it is. Even simple things like walking and trying to make a phone call I’ve learned that people think I’m about to collapse on them, friends listening to me when I’m walking making a phone call. Even on a piece of flat ground, it sounds as though I’m out of breath and whatever even though actually, to me it feels it feels okay. It’s that sort of, something I’m used to.
Other symptoms described by people we spoke to included ‘waking up having to go to the loo a couple of times in very quick succession’ before an episode of AF or a repeated need to urinate during an episode, a grey appearance, feeling shivery, not feeling as strong, and passing out ‘like a sack of bricks’. Nuala spoke of her anxiety ‘because every time I went into AF I had to be cardioverted’ (an electric shock to help return the heart to normal rhythm). (For more see ‘Medical procedures and interventions for atrial fibrillation). 
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