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.
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’).
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”’.
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’.
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’).
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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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