Here is my TTS story.

I am a female 71 year old and live in Warrington, Cheshire. 14 months ago I was diagnosed with TTS. Prior to my episode I had a good medical record although only 4 years prior was diagnosed with T2 diabetes which I control with diet and exercise. I had a late menopause at 61 and did not take any HRT. I tell you this as it may have a bearing on why I had my TTS. My family history is such that my mother had a heart attack when she was 61 and had angina. She lived to be 98 when dementia took her from us Her sister died many years before her in her 30s from what was then diagnosed as a broken heart. Her toddler son died at age 3 and her husband left her for another woman so the stress as we now know it was probably the cause of her death.

My TTS started one Saturday night in June 2017. I started with pains in my chest and down my right arm and then in my jaw I felt quite ill and very anxious. I called 111 and they sent out a paramedic team and ordered an ambulance. The paramedics took my blood pressure and did an ECG and it showed an irregular reading. I was taken to Warrington Hospital A&E and after various tests in the emergency department was sent to CCU where the cardiologist said I had had a heart attack. I spent the night in the Coronary Care Unit and the following day was sent to Liverpool (Broad Green) for an angiogram, ECG and an MRI Scan. I was then diagnosed with Takotsubo Cardiomyopathy as my veins were clear. They also told me I had a left bundle branch block. I was released from hospital on the 3rd day with the usual medication and details of what the medication was for and told my heart had resumed its normal shape. The medication I was on was Aspirin, Ramipril, Bisoprolol, Ticagrelor, Lansoprazole and Simvastatin. I was also given a GTN spray but no longer use it. I was told not to drive for 6 weeks and to take things very easy and to get back to them if I had any further problems.

After a couple of days at home and the pains coming and going it was necessary for me to call 111 again when the chest pains and heaviness and shortness of breath was concerning me. I was told to go to hospital and this occurred three or four times when I went to A&E where they took the usual tests and blood and told my tropin levels were ok and then discharged. On these occasions it was evident the young doctors had never come across TTS before and had to google it and refer to my notes. I was referred to the Rapid Access Chest & Heart Clinic on one occasion and was given an ECG which revealed normal readings and again my LBBB. I received regular calls from the Heart Clinic in Warrington not long after being diagnosed and this was very reassuring I then was referred to cardio rehab but unfortunately I found at first the exercises, although monitored, was a little much as it was about 4 months after the event. I missed a couple of the exercise classes because on one occasion my blood sugar level was very low and on another occasion I had a bad cough. I did attend the information classes which I found very informative. In June this year after taking the Ticagrelor for 12 months I was told by the cardiologist I no longer needed to take it and I have discontinued this.

During the last month or so after a blood check for my diabetes a full blood count revealed I could be suffering from anaemia and I am currently awaiting the results of a gastroscopy and colonoscopy test. Although the results showed organs were normal they took a specimen to send away for analysis. Not sure if this is anything to do with the medication or TTS.

I joined the Takotsubo Support Group not long after being diagnosed and have found this to be a god send. It is very informative, supportive and it is comforting to know that what you are experiencing are normal for this syndrome. This helped me tremendously in the early days when I knew nothing about TTS only what I had found out on the internet.

I am now feeling a lot better, understand the after effects of shortness of breath, heaviness in the chest and strange pains from time to time. I am learning to pace myself better and now have a Blue Badge as I am still finding I walk very slow due to shortness of breath and feel very vulnerable when out on my own and walking from parking areas. I have resumed normal housekeeping duties and light gardening but have to be careful not to overdo things. My sleeping pattern is back to normal now as during the first 8 months I was up until 2 and 3 in the morning unable to sleep due to symptoms of heaviness in the chest and anxiety. I found reading helped a lot. However, sometimes in the last month or so later in the evening I find a feeling of restlessness or anxiety so will monitor this and will mention it to my cardiologist when I see him in January. My first visit with the cardiologist in Warrington (Dr Farag) was in April this year and he told me all was ok and to start pushing myself more.

I hope this information is of help in your studies and apologise if it is a bit longwinded.

Thank you for looking into this syndrome on behalf of all of those who have suffered with this and good luck and best wishes in your further research.