Half-way up the stairs with my morning coffee in my hand I started to feel a crushing sensation, as if something or someone was pushing on my chest with such force I struggled to breathe.
Within moments I was also hit by a sense of pending doom so intense that it felt as if someone was placing a blanket of bad tidings over my body.
Oddly enough, I didn’t feel frightened – the fear only kicked in when I was sitting in a hospital room a few hours later with a doctor telling me there’s a problem with my heart.
But it wasn’t the problem you might think.
I was suffering from broken heart syndrome, a whimsical name for what can be a very frightening experience – and one that for some proves fatal.
Essentially my otherwise healthy heart had become overwhelmed by the pressure I was under – a mixture of grief, regret and intense sadness.
The medical name for it is takotsubo cardiomyopathy – it is where there is a sudden weakening of the heart muscle usually in the left ventricle, the main pumping chamber, and is often triggered by severe emotional distress.
It’s different from a heart attack, where the blood flow is blocked or reduced, usually as a result of a clot – with takotsubo there is no sign of heart disease.
Juliet Sullivan suffered with takotsubo cardiomyopathy – or broken heart syndrome – triggered by the sudden emotional stress after her mother died by suicide
Instead, the hormones released due to an emotional surge tip some of the cells of the heart into what Dr Sanjay Gupta, a consultant cardiologist at York and Scarborough Teaching Hospitals NHS Foundation Trust, described to me as ‘a punch-drunk state’.
The effect is that some of the cells stop working as normal and the heart temporarily stops pumping blood as effectively. As a result the left ventricle can balloon outwards. In rare cases, takotsubo can lead to cardiac arrest.
My symptoms – breathlessness and chest pain – were typical. Others may also feel tired or faint.
There are 2,500-5,000 cases of takotusbo in the UK each year – around 90 per cent are in post-menopausal women.
As Dana Dawson, a consultant cardiologist at Aberdeen Royal Infirmary, explains: ‘It occurs predominantly in people who are “by and large healthy”, but typically it’s a result of a reaction to upset or even happiness. There are even people who’ve developed takotsubo during weddings [due to the intensity of emotions].’
When my symptoms hit, I knew none of this and was unsure what was going on. I certainly didn’t think I had a heart problem, my best guess was that I was having a panic attack.
It would have been a first for me but it had been one hell of a 24 hours.
The day before – ironically, Friday 13 (in October 2023) – had begun at 5.30am, logging in to my computer to watch the inquest into my mother’s death – which was being held thousands of miles away in the UK. (I left the UK and moved to Canada over 20 years ago, aged 35.)
Juliet, her mother and her elder sister Karen. Their mother’s inquest brought back memories of the day Karen had called Juliet in March 2023 to tell her: ‘Juliet, she’s gone’
For two hours I sat there watching my elder sister Karen and my Mum’s GP discuss my Mum’s health and state of mind in the run up to her death.
The inquest was a formality, we knew the cause of death – my mother, a troubled woman, had, aged 86, taken her own life.
Watching the inquest brought back memories of the day in March 2023 when I’d collapsed sobbing after Karen called me to say: ‘Juliet, she’s gone.’
It wasn’t the reaction I expected. Mum was difficult, but she had presence and without her I was suddenly aware of a large, gaping hole.
The inquest had also brought back how my sadness turned to pure anger when I learned that Mum, who lived in Brighton, had taken her own life. It was the worst moment of my life.
We had a difficult relationship and Mum had put the phone down on me many times over the years, but this trumped that. This time she had taken away any right of reply – and the chance to say goodbye.
I snapped my laptop closed after the inquest and I sat in the house feeling numb.
For some reason I then felt the need to challenge myself with a hike up one of the steepest hills in the area. Soon afterwards I was sitting in a circle of people at the suicide bereavement support group, which I’d been attending weekly for nearly a month.
Mum was difficult, but she had presence and without her I was suddenly aware of a large, gaping hole, Juliet writes
We were asked to write what we wished we’d said to the person we’d lost and throw it into a fire. I wrote, ‘I wish I’d listened to you’.
I threw my paper into the fire and watched it burn. I was heartbroken. I’d had years of coping with my mum’s narcissism, but at that point I felt I was facing the reality that maybe I didn’t pay her enough attention.
Fast-forward 12 hours and I was on the stairs, unable to suck enough air into my chest to breathe properly.
I texted my daughter Kerri, then 35, who I knew was somewhere in the house. She called the emergency services and the advice was to get me to hospital. By the time we got there, I was calmer, the sense of doom was lifting. I was quickly given blood tests and an electrocardiogram to check the electrical activity of my heart, which was normal.
But the doctor who came in with the results of a blood test looked worried. It measured my levels of troponin, a protein released when the heart is damaged. The reading was high, which suggested I was ‘experiencing the symptoms of a heart attack’, he said.
He asked me to relate what I’d been going through, and after I told him about the inquest and the bereavement group, he said he thought I had experienced takotsubo syndrome.
I cried – the idea that I was suffering the ill-effects of a broken heart sounded so tragically sad.
It was also confusing – I eat well, am not obese and don’t smoke. OK, I love wine, but not that much and I go to the gym a few times a week. But none of these things matter with takotsubo.
I was kept in hospital and over the following days had an angiogram – an X-ray to inspect my blood vessels – which showed them to be clear, and a heart scan. This showed my left ventricle was heavily enlarged, which as far as the doctors were concerned, was proof of the takotsubo diagnosis. (The term takotsubo refers to a Japanese octopus trap, as the left ventricle can appear ballooned at the bottom, resembling the trap.)
It was a lot to process and I had so many questions – but the doctors had frustratingly few answers.
I was discharged after six days with pills for high blood pressure to reduce the strain on my heart while it ‘healed’ – and that was that.
The doctor who discharged me said ‘my only advice is to live a life without stress’.
I didn’t laugh in her face, but it struck me as hilarious. It’s not feasible even for someone who isn’t a mum of two running businesses in two countries (one a real estate business, another selling Christmas trees) as I was doing at the time.
I felt I was in a no-man’s land. While they initially treated me as if I’d had a heart attack, once I was diagnosed with takotsubo they didn’t know what to do with me. This is typical, as I later found out from others.
The void of information made me seek my own. I joined a Facebook group for those affected, read everything I could and contacted experts.
I came across one woman who was struck by takotsubo at a children’s birthday party, and a man in his 70s who – after a lifetime of trauma – experienced takotsubo while having a tooth removed under local anaesthetic. But not all involved trauma – one woman developed the symptoms while sitting at home watching TV.
Why some go through horrific experiences without developing takotsubo while others do suggests there is some genetic element to it, says Dr Gupta. ‘Ultimately we still don’t know what causes it.’
There’s no treatment per se, but people may be given blood pressure pills to reduce the strain on the heart as it recovers.
‘People need to learn to pace themselves through recovery as their heart is still swollen, and we know that it can remain swollen for five to six months,’ says Dr Dawson.
‘It’s like a muscle bruise; while you’ve got that bruise the muscle will still hurt, so you have to be patient and wait for it to heal.’
Initially I felt very tired and I couldn’t go back to the long walks I once enjoyed. Even after a few weeks while I could manage physically, I couldn’t emotionally – I was scared of over-exerting my heart and even avoided driving for weeks in case aggression by another driver triggered my heart to stun itself once more.
Tiny pains in my chest which could be indigestion made me nervous. That was despite the fact that at a follow-up appointment three weeks later, my cardiologist said ‘your heart is now healthy’.
Two years on and I feel this has robbed me of my spark, but my life is slowly becoming fuller again. I’m tired – but then I’m 59.
I haven’t avoided stress because I can’t. Recently I was in Mexico for my son’s wedding and I jumped into a wave that smashed into my chest and I got tossed back on to the shore. My daughter said: ‘Why did you do that knowing that you’ve had takotsubo – exposing yourself to cold water and physical trauma?’.
I often wonder if I hadn’t attended the inquest, had the big walk and then gone to the bereavement group that day could I have avoided takotsubo?
I will never know, but my advice is if your body says, ‘This is too much’ but your brain says, ‘Oh come on, do it’, then listen to your body. It knows your limits even if your mind doesn’t.
- For confidential support, visit samaritans.org or call Samaritans on 116 123
