On March 3^rd, I felt unwell most of the day: headache, sore neck, nausea – and a weird pain in my left shoulder blade that had been there for a week or so. When the shoulder pain came on very strong and was accompanied by chest pain and a strange heaviness in my left arm, I thought it was a gallbladder attack. I texted a friend and she urged me to go to the hospital.

That ER visit turned into 11 days in hospital. I was told I had a heart attack (NSTEMI) and over the course of the next few days it felt as if I had a different diagnosis every day: Takotsubo, MINOCA (Myocardial Infarction with non-obstructed coronary arteries), Coronary Artery Spasm, and Microvascular dysfunction. I continued to have chest pain daily and even at the time of discharge I was told: “We are not really sure what you have”. They said I was ‘atypical’, that this happened to women my age, that it was caused by stress but that it could be related to perimenopause.

I was sent home with very little information. I was quite scared since I lived alone, was going directly from the hospital to a new apt and didn’t know how to manage the pain. I had very little energy and had to hang on to the walls when I walked. I needed someone to be there when I showered, and someone to bring me meals, to do groceries and to do housework.

Over the course of two years, Emergency room visits were frequent, angina was daily, the different diagnoses and treatments continued. Through this website, I learned more about CAS which in my opinion seemed to fit my symptoms. I had a good relationship with my cardiologist, and she referred me for a heart physiology study / provocative angiogram. I was finally diagnosed with a Myocardial bridge, Endothelial dysfunction, Coronary Artery Spasm and Coronary Microvascular Dysfunction (Kounis syndrome was proposed along the way and is still unconfirmed). That combination has been difficult to treat, and my condition fluctuates. I have good periods and difficult ones. I have had to reduce my work hours and think about life differently.

I’ve learned to do what I can to support my health, rest when I need to, and be gentle with myself when things are difficult. It has certainly been a lesson in acceptance and self-compassion. I am grateful to have found others who share this experience as well as a medical team that supports me.

Dima, aged 59

  Canada