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 heartbeat) 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.

Age at interview 74

Gender Female

Age at diagnosis 30

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

Age at interview 73

Gender Male

Age at diagnosis 61

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For Jeni, palpitations could be uncomfortable and painful.

Age at interview 41

Gender Female

Age at diagnosis 40

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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.

Age at interview 56

Gender Male

Age at diagnosis 52

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

Age at interview 78

Gender Male

Age at diagnosis 64

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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.

Age at interview 64

Gender Male

Age at diagnosis 56

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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.

Age at interview 64

Gender Female

Age at diagnosis 53

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George X experienced pain during an episode of AF.

Age at interview 78

Gender Male

Age at diagnosis 63

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Breathlessness could curtail everyday activities. Janet, who lives by the sea, described how she had to “stop about halfway” 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.

Age at interview 61

Gender Male

Age at diagnosis 50

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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).

What causes atrial fibrillation?

No one can be sure what causes atrial fibrillation (AF). There are some factors, however, which may make people more susceptible. {media 62226} Yet, making...