Recovering from takotsubo

After being diagnosed with takotsubo cardiomyopathy, Sarah soon discovered how little was known about the condition. Now she’s sharing her story to help others facing a similar journey of uncertainty.

When Sarah’s dog suffered an anaphylactic reaction, Sarah never dreamed the physical and emotional stress of the incident would trigger her own life-threatening heart event.

The pair were out walking on a November morning in 2017, when Mia the dog was stung by a bee. Within minutes Sarah could see she was struggling to breathe.

Desperate to get her to the vets as quickly as possible, Sarah carried the 25kg dog up a very steep hill – the shortest route back to the car.

“Before I scooped her up in my arms and carried her up the hill, I got on my knees and prayed, ‘Please don’t die’. It was very stressful and physically very difficult.”

Thankfully Mia survived, but Sarah had found the event particularly traumatising. “I commented to my children many times over the rest of that day, ‘Oh my God that was the most stressful situation I’ve ever been put in.’”

That stress was to take its toll later that same night.

Waking up to heart attack symptoms

“I woke up at 2am with a very definite crushing sensation in my chest, pain going down my arms and feeling quite clammy.”

Thinking she’d pulled a muscle as a result of the physical exertion earlier in the day, Sarah took some anti-inflammatory medication. However the pain continued.

“I didn’t go back to sleep, it was too sore. I was just lying there thinking about news stories I’d heard on the radio about the symptoms of heart attacks. In fact, I’d heard one only days before. That’s what was flashing through my mind.”

By 4am, she decided the only option was to go to the A&E department at Auckland Hospital to have her symptoms checked out.

Takotsubo diagnosis

Once at the hospital, staff quickly hooked Sarah up to an electrocardiograph (ECG) machine and carried out some blood tests, which soon revealed damage to Sarah’s heart.

“Within another half an hour I was having an angiogram, which I found incredibly painful. It was incredibly sore.”

The angiogram revealed Sarah was suffering from a little-known condition called takotsubo cardiomyopathy.

Takotsubo causes a change in the heart’s normal pumping function leading to symptoms that mimic a heart attack caused by coronary artery disease.

“The doctors said it was a classic takotsubo. They said my arteries were crystal clear – which made me feel quite happy – but that I’d suffered a takotsubo stress-induced heart event.”

Sarah spent 24 hours in intensive care before spending a further six days on the cardiac ward.

“I have to say the staff were absolutely fantastic. People moan about the health system, but I couldn’t say anything negative about the care I received in Auckland hospital.”

What was the cause?

Like most people who suffer a heart event, one of the biggest questions in Sarah’s mind was ‘what caused this?’

Unfortunately for Sarah and others like her, the exact cause of takotsubo cardiomyopathy still isn’t completely clear – although it is known that stress can play some kind of role in the condition and it is more common in post-menopausal women.

The majority of sufferers (around 70%) have experienced significant physical or emotional stress in the lead up to their event, hence the condition’s alternative names: stress-induced cardiomyopathy or broken heart syndrome.

Sarah remains unsure whether her event was purely as a result of the physical and emotional stress caused by the situation with her dog, or whether it was a culmination of a particularly stressful period in her life.

“The day all the stress happened, was at the end of a very long and stressful few years of my life. That day was probably just the nail in the coffin for me.”

How long will recovery take?

Sarah has also found it difficult to get accurate information on what to expect during the recovery period. Medical staff suggested she should be back to normal within about three months but this hasn’t been the case.

Sarah says it’s only recently that she’s begun to feel better. “It’s only in the last couple of months that I’ve started to feel an increased wellness. But even nine months on, I still can’t walk and talk at the same time. I just can’t do it.

“I feel frustration that I don’t have my energy levels that I used to have. I haven’t started working because my job is really physical. I’m a massage therapist and so my arms are everything, and I feel that I still have weakness down my arms. The catch 22 is that I need to start working because I need the money.”

Ongoing symptoms

Sarah is not alone in her recovery experience – recent research from the UK has indicated that recovery from takotsubo may take longer than clinicians first thought. It showed some aspects of heart function are still impaired at least four months after the initial takotsubo event and that it is not uncommon for people to experience ongoing symptoms months later.

Sarah’s ongoing symptoms include breathlessness, fatigue, and pain in her arms and chest. On a couple of occasions she has gone to hospital, concerned she may be suffering a second takotsubo event.

Although these have been false alarms, one of the visits prompted clinicians to do a Holter monitor test which revealed she was suffering from bradycardia, an unusually low heart rate.

Lack of information

The lack of information and available treatment for these ongoing symptoms has been a source of frustration for Sarah.

“My GP is very caring and very sweet, he’s searching for answers to try and help me, but he doesn’t always know,” Sarah explains.

Meanwhile, an outpatient appointment at Greenlane Hospital about six months after the event, left Sarah worrying that her symptoms were all in her head.

“The registrar kind of led me to believe it was all psychological because I wasn’t feeling better. That was hard to cope with.”

While she’s happy not to have the clogged arteries caused by coronary artery disease, Sarah has found it frustrating there isn’t more that clinicians can do.

“In some ways I should go, ‘I’ve got clear arteries, yay, that’s really good’, but it would be nice if it could have already healed properly.”

A shock for Sarah and her family

“Having a heart event was a real shock,” Sarah admits. “It’s not something you ever expect. I’m only 54 for goodness sake. 54 feels way too young to have a heart condition. Especially when I’m not in the danger zone for [ischemic] heart disease. I’m relatively slim, I don’t have high cholesterol, and I don’t have diabetes.”

But the risk factors for takotsubo tell a different story, Sarah notes. “I’m a woman. I’m absolutely smack bang in the middle of the age range, and I had stress galore.”

The event was also a shock for Sarah’s family and friends. “My kids were quite frightened by it I think. My boys ranged from 17 to 21. I am a solo mum, so I’m their world. They’ve become more helpful, more caring since. They’ve made an effort to help out more, physically which is great.”

Meanwhile she feels some people have been baffled by her slow recovery.

“When you tell people you have a heart condition, most people assume initially it is diet-related and that you need a stent, but that once you’ve had that stent you should be healthy and reinvigorated. So they look at you, as if to say, why is it going on so long?”

Sharing stories

Sarah says there is a lack of support for takotsubo sufferers in New Zealand – the only support groups available are based overseas.

However she was heartened by stories shared by other people with takotsubo during a recent information day at Auckland Hospital.

“It’s good to know you’re not alone. When you’re feeling so unwell and other people confirm that they’re unwell, it lets you know that it’s not all in your head. While everyone’s story was different, they all had commonalities that were heart-warming and reassuring.”

She says that having someone to talk to about her condition would have been really helpful in the early stages of her recovery.

“It would have been really nice to have had a support person who has been through it, someone who could identify and understand the situation you’re in. Even just a phone call to say, ‘You’re doing ok. This is normal.’”

Now that she’s further on with her own recovery, she’s happy to talk to others who may have experienced the same problem. “If there’s anyone out there, who suffers takotsubo and feels they need to talk to someone, I would talk to them in a heartbeat.”

 

Shared November 2018

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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14 Comments

  • Susan 29 June 2021

    Is anyone aware of a Takotsubo survivors support group or website?  I had my experience April 2020.  My echocardiogram says my heart is better but my heart doesn’t agree.  I would really love to talk to others like me - I need to know I’m not losing my mind.  Thank you

  • Leonie 15 May 2021

    I have just experienced my third Takotsubo event -  in 2003, 2012 & now 2021.  Fortunately I have the same cardiologist who is travelling the journey with me.  Now being 2 wks following the third I am still feeling overwhelmed by the experience.  I feel very weak, fatigued and extremely tearful.  I also think that my food taste have changed & remember that on my previous occasion I did not enjoy my previous food choices.  My son, a chef, found it hard to find a food I enjoyed.  Have others found taste an issue

  • Maryann 11 February 2021

    I appreciate all your stories. I am six days out of Takotsubo cardiomyopathy. I use to hike 6 miles a day and play on the tennis courts for three hours a day. Today I could barely climb a flight of stairs without being out of breath and having chest pressure. I am totally fatigued and devastated. Like all of you my angiogram was clear.
    Prior to my event I had very high blood pressure and had been under a lot of stress for a year. The doctors attributed my chest pain and shortness of breath to my high blood pressure. I am now on a beta blocker which I am wondering if that is contributing to my exhaustion. I long for my old energy and the thoughts of it not coming back or waiting six months for it is rather depressing. I am moving in a couple months and I am expecting twin granddaughters in June. I was a healthy slim active 65-year-old woman and I’m hoping to be back to my baseline soon.

  • Lynda 13 December 2020

    I’ve just had a takotsubo attack, just out of hospital. Listen to the doctors and nurses it’s so hard not to do anything but that’s exactly what you have to do.
    I had possible signs leading up an incident of chest pain which I though was just me being upset, then last year I went to emergency with a big migraine that I couldn’t shift they picked up a heart murmur ..Months later I complained of having aching arms ....maybe these where all signs who knows all I do know is that I had been under a lot of chronic stress.
    Covid didn’t help at all. That’s my story so far wishing us all full recovery.

  • Penny 14 November 2020

    I am 6 days after takotsudo cardiomyopathy event. I am encouraged by your comments.
    Ive lived in a different country from my family for 8 years as we decided to give up our stressful jobs and opt for early retirement.
    Things have been as stressful since lockdown as we are unable to fly back for visits with our family and they are not allowed to travel to is because of restrictions.
    I’ve been having pressing chest pain for about a month but put it down to indigestion.
    Saturday I had dreadful news that my brother had died. Within 2hrs I was in hospital having an angiogram and put on ICU. A lot of what was happening was lost in translation,  I was unable to have my husband with me due to covid restrictions and so very upset about my brothers sudden death. I am now not able to fly for about a month they said…If the flights aren’t cancelled again due to covid. I’m 57 yr old normally fit and healthy woman, ex police officer who is commonly used to dealing with stressful situations. I’m scared that I might not be able to get to see my family for a long time yet. I’m still getting the chest pains which are frightening in themselves but reading your stories I’m encouraged that this is normal.

  • Sabah 21 October 2020

    I have read all the stories above and it really helped to see that I am not alone out there.

    I have found 2020 COVID-19 situation has caused me alot of stress. Lockdowns and fear of death hovering around you, caused anxieties.
    Keeping family together during these difficult days is also a challange. Moreover, unreasonable neighbours were sending police over to Bring the noise level down.
    But it was lock down
    All adults were home, and Emotional and mental health was at greater risk, financial difficulties were aggravatIng the situations too…
    anyway in this situation, death of closer friends because of Covid stressed me out and we couldn’t even say good bye to them… I ended up with Takotasubo attack ... It was like I have a big rock on my chest.. 
    999 -Paramedics were so helpful throughout that time… They insisted to take me to hospital even though I was feeling the pain is settling down a little..
    I was taken to hospital and As soon as I got there I was blacked out for 3hours…
    it was confirmed after 6 hours that it was a heart attack ...
    I was admitted in the hospital my Fears to catch corona wee very high… Epsom hospital really Looked after me like a baby even though I am 53…
    i was sent to Harefield hospital for Angiography and it was such a journey where I was alone Without any family member. Thanks to technology that helped to keep them in touch.

    Eventually, i was told that i have no blockage in my heart and had suffered from heart broken syndrome…
    Even after 2months I having chest pains and feel so weak. It make me more anxious when I am told that my heart shape is back to normal…

    Please suggest what could help? I am feeling NHS is too busy with other things ...

  • 2164 15 August 2020

    I’m a 55yo Kiwi in the UK and am three weeks in after a diagnosis of Takotsubo syndrome. While my heart function and shape returned to normal within four days, I’ve been kept on medication for the short term and so don’t know whether it’s the TS or meds or both that are making me tired, with little stamina and breathless at times. I still have moments of pain, which are worrying, but they seem to be decreasing. I can definitely feel the effects of TS when I am around a stressful situation so am learning to avoid or physically distance from these.
    Because it happened and I was hospitalised away from home, I’ve yet to see a local cardiologist to find out how long before I can return to work and how much I can realistically do. I know I wouldn’t be capable yet though. I have a history of AF but never imagined I’d have something like this strike out of the blue!

  • Ange 23 July 2020

    I was diagnosed with takosubo cardiomyopathy at the end of April during lockdown. The cause was after an emotional breakup with my partner.
    I was in CCU in Auckland Hospital for 4 nights and had an angiogram, ECG and CTPA. The staff within the unit were amazing apart from a few problems with the tests. I’m still very fatigued, also going through an exercise recovery and healthy heart programme which I strongly recommend.

  • lorraine 8 March 2020

    I had similar event the same as Sarah’s just a week ago takotsubo cardiomyopathy just after having a disagreement with someone I am 67 its the last thing I could have thought to happen to me

  • catherine 12 February 2020

    I had a Takotsubo in April 2017
    4 months later I had an EF of 60 and heart has resumed normal shape so I was told I should be fine (except that I felt dreadful).
    A year later I completed cardio rehab and was discharged out of the system (but still not feeling right).
    I am slowly better, but still not 100% and have to accept that I will never be fully functional as I was pre takotsubo.
    The thing that annoys me is that having been pronounced ‘recovered’ despite evidence to the contrary and trying to live normally for the most part ... I manage the symptoms as best I can, avoiding stress etc ...
    It is NOT all in my head as some cardios like to infer.
    I have nowhere to go to when my heart hurts, it goes arythmic, and races well over 100BPM and I feel dizzy and weak ...for no reason at all that I can discern… If I were to mention it to a doctor it would make it seem like I am a hypochondriac or a mental health case therefore I would be further invalidated and considered unreliable….(ergo be ignored)
    I am neither ...however roll on the day when science can actually catch up and find out what is actually happening when Mrs heart plays the bongos….just because the cardiologists cant see it, doesn’t mean that there is not something happening. sigh

  • Kathleen 2 March 2019

    I had a heart attack two days before Xmas in 2014 and had a double bypass operation on the 8th of January 2015. I sometimes wonder if my heart was damaged previously as I suffered a major trauma if losing my first husband who was only 29 of a sudden cardiac arrest. We had two young children at the time and I was suddenly a widow. Years after losing my husband I would feel very over whelmed and have symptoms of breathlessness, feeling clammy and it was put down to having panic attacks from the trauma I have been through. I’m sure my heart was broken and I suffered stress related symptoms. Today four years after my bypass I feel renewed energy and no longer suffer with breathlessness. Life is good and I live each day as if it is my last. All the best Sarah and thank you for sharing your story.

  • Helen 21 February 2019

    I suffered from Atrial Fibrillation for years and then had a heart attack .
    It took about a year to feel normal again .
    People in my retirement village thought I was malingering because I’d had stents therefore should after 3 weeks be fine . I cried about that .
    Waikato cardiac rehab group was very supportive and helped me regain confidence.
    Reach out to people if needed Sarah . Good luck .

  • anne 19 February 2019

    I do not have your diagnosis, but really feel for you in your stress.
    Keep looking for a support group it can be most helpful to you, maybe some Tai Chi group? Best wishes, Anne

  • 6721 19 February 2019

    I had a heart attack 2015 and found that support was the most needed part of recovery. In my town there was no cardiac recovery group as in some of the bigger towns or cities so for someone by themselves it can be a really hard road.
    I wish Sarah all the best for the future.

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