PATIENT STORIES
The following accounts are true life stories of women who have had different types of heart events; diagnoses and are living with some form of cardiovascular disease.
Whilst each journey is different, they all share common aims. By giving voices to their experiences, they can offer valuable insights into the condition and increase the reader's knowledge by creating an engagement that hard medical and health facts alone cannot achieve.
Women's Heartbeat's aspiration is that by shining a light on women's heart issues and by sharing and giving human connection to the lived experiences of the female patients who have kindly shared their story, it will give insight into how women's hearts and heart conditions can be different to men's. It will also empower women to speak up where they feel it necessary for better outcome for their health as well as giving insights which in turn lead to driving meaningful change . ​​​
Linda's story
Linda was 62 at the time of her first Takotsubo. She lives in Warwickshire in the UK. This is her story:
Prior to my first Takotsubo event in 2015, I was working in a high security men’s prison, facilitating courses to groups of prisoners to help them address their offending behaviour and work on their thinking skills. I loved this work, although I was aware at times after prisoner interaction that I had a lot of adrenaline in my body which meant it was difficult to get to sleep at night. I was married with three grown-up sons and had a happy family life. I was very active, had a healthy lifestyle and enjoyed walking and gardening.
On the day of my event, I had left work and was meeting with a tree surgeon in the garden at my son’s house one February late afternoon. It was very cold and while I was waiting outside for him to look in his diary he took a telephone call which went on and on. I could feel myself becoming extremely irritated that he wouldn’t curtail his call and just deal with my situation! However, I said nothing. Once he had gone I went back inside the house to lock up and felt a sudden, extreme pain in the centre of my back and chest.
My initial thought was it must be heartburn. It was a really intense pain. I decided I would drive the four miles home and remember thinking on the way this can’t be a heart attack, I’m slim and fit and I had an angiogram a couple of years ago and they said my arteries were as clean as a whistle and I was unlikely to ever have heart disease.
When I got home I was still in incredible pain. I didn’t feel it was important enough to phone for an ambulance, so I asked my neighbour to drive me a couple of miles to our local hospital. My husband wasn’t home from work.
I was quickly attended to in A&E where I had an ECG and blood was taken. I was given morphine. After about four hours the pain was subsiding, and I was admitted to the hospital. The next morning the consultant said my troponin levels were high and I had had a heart attack. I was amazed! She said they were going to send me to another hospital. An echocardiogram revealed my left ventricle was distorted due to a massive adrenaline attack and an angiogram showed that my arteries were clear. I was told it was Takotsubo Cardiomyopathy which mainly affects post-menopausal women.
They said they had had two cases the previous year. I had never heard of it, but I was told it was good news as I hadn’t had a heart attack and that I would make a full recovery. I was sent home with a one-page handout from the British Heart Foundation and said I would be seen again in three months for an echocardiogram to check my ejection fraction.
I was bewildered by this diagnosis and how little information there was on the Internet. My GPs knew very little about it. I was put on a cocktail of medication that was routinely given to those who had had a heart attack. I was extremely fatigued and breathless and could do hardly anything. It was thought the beta blockers were making me breathless, so I came off them. Any exertion gave me tightness in the chest and I limited activities to making myself a drink and going to the toilet! Having a shower and washing my hair was totally exhausting. Fortunately my husband was there to cook and look after me.
After an initial very weary six weeks I started to slowly recover but took the decision to take early retirement, along with my husband. I adopted a simple life with walking, gardening and family being my main interests although I had volunteered become a mentor in a local high school but due to feeling the adrenaline in my body again I had given that up.
It was a real shock to have a second episode at the end of June 2019 at the age of 66. I had been on a walking holiday in the Yorkshire Dales with my husband. At the end of that time we went to stay with a group from our church at a conference and retreat centre in Kettlewell. After giving a short presentation to the group I was aware that my pulse had shot up from a usual 40-50 bpm to 100. I suddenly experienced incredible chest pain and said to my husband to call an ambulance.
Due to the distance involved and the fact that there was a cycling event in the Dales that day they took the decision to send for the air ambulance and I was airlifted to a Hospital in Middlesborough where I stayed for four days. I remember being so disappointed that I was not even well enough to enjoy the views from the helicopter! My husband followed by car and then spent four nights in the Premier Inn!
The whole episode was being filmed for a TV programme about air ambulances. During the journey in the helicopter I was very sick with the morphine they had given me for the pain. The doctor asked if I knew what was causing the pain and told me it was caused by a clot in the heart. I hadn’t got the energy to tell him that in fact a Takotsubo mimics a heart attack and my arteries were clear.
I felt very ill but received excellent care from the Cardiology team where they carried out the same procedures as previously to confirm it was a second Takotsubo and I then returned home to Warwickshire where my husband once again looked after me as I felt unable to do anything except rest.
Soon after coming home I felt extremely unwell and was admitted to my local hospital for three days after I experienced something like a tight band around my rib cage and severe breathlessness thought to be due to the medication I was on. Once again the beta blockers were stopped and after ten weeks I felt able to start cardio rehab with the physio department at the local hospital which enabled me to slowly build my fitness levels in a safe place.
I felt that my recovery took longer but I ensured I did all I could to reduce my adrenaline levels and rested well, listened to relaxation/meditation for an hour daily, walked each day and learnt to accept life as it was at that moment yet looked forward to getting my strength back. Walking up inclines when out walking still made me breathless.
In September 2020, a year after my second Takotsubo, I had a third event. Following a journey home from a relaxed holiday in Dartmouth I didn’t feel very well, I thought it was my stomach. The following day we had a short journey to see my son and I felt unwell in the car with atrial fibrillations. Arriving at his house, pain started in my chest and back and we called an ambulance. I was taken to hospital in Banbury. I knew it was another Takotsubo.
This time I was clued up as I had discovered a supportive Facebook group where we could share our experiences and research papers we had found. I had learnt to become my own advocate. I said no to the beta blockers as they shouldn’t be given to people with bradycardia! On the last two occasions I had morphine for the pain which knocked me out for days so this time I wanted just paracetamol. The pain wasn’t as intense as the first two but was still with me for eight hours. The doctors didn’t think it was a Takotsubo. A few hours later a doctor came to see me and said, you are right. An echocardiogram and high troponin levels confirmed Takotsubo. The last time I had an angiogram in Middlesbrough the doctor said. “If you ever get this again tell them you don’t need another angiogram, your arteries are clear!” They did not do one this time.
Since my third Takotsubo I have been given a pacemaker due to bradycardia (low pulse) and three years later I’m generally feeling well and I’ve worked on increasing my stamina.
If I could share what I have learned with others going through it, I would say I have totally reassessed my lifestyle. I did not go down the anti-anxiety medication route as I wanted to try a more natural approach. I have learnt to change some of the ways I respond to situations. I have worked at reducing the fight or flight response (sympathetic nervous system) and activating the rest and digest response (parasympathetic nervous system). I now practice abdominal breathing to stimulate the vagus nerve along with meditation, mindfulness, walking in nature and limiting stressful interactions.
I am aware that not all cases of Takotsubo are caused by stressful situations, some can be physical and for others there is no known cause. I would like to think that my medical information can be used to inform research, but I am not sure this happens.
Claire's story
Claire was diagnosed twice with Takotsubo. This is her story of how finding the right cardiologist matters:
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It was a Thursday evening and I had been to my usual choir practice. We were discussing some unpleasantness there had been in the choir, starting a few months previously, with some rather unkind emails that had been sent. Finally, he said he was going home and I walked a few yards to the pub where I knew some of my choir friends had already gone to.
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As I walked to the pub I started to feel unwell. I felt a little bit shivery, even though it was a warm evening, and suddenly I started experiencing chest pain. It wasn’t too bad at first and it just felt like indigestion. After I reached the pub and sat down, the pain increased and I began to suspect it was not indigestion after all and after refusing at first, I finally allowed my friend to ask the pub landlord to ring for an ambulance.
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Paramedics arrived very swiftly and told me that depending on what the ECG showed, I would either be taken to the local hospital or to Coventry University Hospital. My husband and son, having been alerted to the problem, arrived shortly afterwards. A few minutes later the ambulanceman confirmed I would be taken to Coventry. The pain was now so intense that the paramedic gave me intravenous morphine. My son came in the ambulance with me and my husband followed in the car.
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Immediately I arrived at the hospital I was met by a team of people. The consultant told me I was almost certainly having a heart attack. I was given aspirin and taken straight along to have an angiogram. The consultant then told me that I had not had a heart attack but something called Takotsubo Cardiomyopathy and wrote it down on a piece of paper for me.
I think my first feeling was one of relief that it was not a heart attack but I felt confused by the diagnosis as I had never heard of it. I was taken to the coronary care unit and hooked up to various monitors. By this time it was the early hours of the morning. I dozed intermittently but awoke feeling as if I was suffocating and I was finding it difficult to breathe. Almost immediately a doctor was by my side (I assume the monitor had alerted them) and he told me it was fluid in the lungs caused by heart failure. I was helped to sit up and given medication which resolved it. I stayed in the CCU for four days.
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After I was discharged, I felt exhausted and had no energy at all. I felt relieved that I was still alive but worried that I would never feel my old self again. When I was told that it was usually caused by a very stressful event and/or extreme anxiety, I was puzzled. I have never suffered from depression, anxiety or stress.
University College Hospital prescribed Bisoprolol (a beta-blocker) and Clopidigrel (a blood-thinner), which they told me I should be on for a year, and referred me back to my local hospital. I had a follow-up appointment with the cardiologist there.
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Although I felt that the Coventry doctors knew and understood the condition, the cardiologist at my local hospital appeared to know little about it and was not interested. A few months afterwards he told me I was fine (although all they had done that day was to test my blood pressure) and was dismissive when I told him I still had no energy and still did not feel right. When I asked him when I could come off the medication, he told me I was now on it for life and recommended that I also start on statins. When I asked why, if I had, as he said, totally recovered, he just said vaguely that it was to protect my heart.
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There was very little information about the condition on the internet I did find a specialist in Takotsubo in London though and my GP, who was concerned by the lack of interest shown by the local cardiologist, immediately referred me to him. I had my first appointment with him in 2015 and I was so relieved to find someone who knew about the condition and was interested in me. For the first time I was asked to give a detailed account of what happened before the event and he told me that I no longer need to be on blood-thinners, beta-blockers nor statins. I did feel rather better when I came off these.
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Over the next few years I felt I was doing OK. My blood pressure was much higher than before my TTS so my medication was increased and I was reviewed by the TTS specialist every year.
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In 2021 I had to have a minor procedure under anaesthetic at my local hospital. The doctor and anaesthetist were aware of my past TTS. I wasn’t worried. In 2015 I had had a partial knee replacement and in 2017, as the first one had failed, I had a full replacement in revision surgery. Neither time had I had any heart issues. However, when I woke up in the recovery room after this procedure, I started to have a dragging feeling down my left arm. Within a couple of minutes a cardiac nurse was by my side giving me an ECG. I was then told I was having a heart attack and was being blue-lighted to Coventry. In Resus, I was given another ECG and blood tests which confirmed that my Troponin was very high. However, I did not feel too unwell and certainly did not have the extreme pain I had experienced the first time. An angiogram performed later confirmed I had had a second Takotsubo.
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I was stunned to have another TTS. I just thought I never would. I was getting on with my life and enjoying retirement. Despite the fact that this TTS was so much milder than the first, it has actually left me with more issues. I developed exercise-induced left bundle branch block and labile blood pressure which has been quite difficult to control. The LBBB is a condition where the right and left ventricles of the heart go slightly out of sync and this caused me to feel breathless and dizzy when exercising. Playing table-tennis, my greatest passion, became rather difficult. Fortunately, the other players were sympathetic and if I suddenly had to stop in the middle of a game, sometimes repeatedly, they patiently waited for me to recover before we carried on. Bell-ringing was more problematic. I was often worried that when I started to feel dizzy and faint, I might miss the rope and not only cause injury to myself but to the other ringers. When it became apparent that I was making them anxious too, I reluctantly gave it up.
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Meanwhile, my cardiologist had referred me to an electrophysiologist and in December 2024 I had a CRT pacemaker fitted. This has really changed my life. I can now play table-tennis without having to stop the game every few minutes, and I have gone back to bell-ringing. A treadmill test performed in September 2025 indicated that the pacemaker was doing its job perfectly!
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Am I still having issues? Well, earlier this year, my blood pressure which had been so high in the past suddenly plummeted and I had to be taken off 75% of my medication to stabilize it. I’m still not sure why that happened but there are many mysteries in life.
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My husband, children and all my family have been really supportive through all of this and that has assisted me in my recovery. Finding a cardiologist who understands the condition certainly helped me enormously. I found mine to be very reassuring. I do believe that thinking positively is important. If you let TTS define who you are, you never move on. I try not to get too hung up on my blood pressure as I am sure worrying about it is only likely to make it worse. Meeting up with friends and enjoying life to the full is really important!
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