J’s story of living with coronary artery spasm

My first episode was while I was at work. I had been rushing around as we were very busy and short staffed but I had been sitting for half an hour when the chest pain started. So I was carted off to A&E and subsequently admitted, but not onto the cardiology ward as there were no beds. Fortunately my troponins were negative showing there had been no damage to my heart. I was sent home after being told it was indigestion and that young women who don’t drink or smoke don’t have heart conditions. I was discharged. I knew full well it wasn’t indigestion, having had oesophagitis previously. My dad has coronary artery spasm and my episode was exactly like his.

2 months later I woke up with central chest pain that started off as mild but within 5 minutes was excruciating. It was much worse than the last time. I was sweating, nauseous and incapable of moving to get to my phone to ring for an ambulance. When it stopped approximately 30 minutes later, I drove myself to A&E. When I was asked to describe it, I asked the Dr if he had ever watched the film alien. I told him I wouldn’t have been surprised if an alien burst out of my chest just like it did to John Hurt’s in the film.

I’m now under a new cardiologist who has done a stress echo and demonstrated my arteries are clear. As I have had chest pain relieved by GTN I have a presumptive diagnosis of coronary artery spasm. Initially I was started on amlodopine alone but for me, this made little difference. I’m now also on isosorbide mononitrate which has helped both me and my dad enormously. My dad went from having episodes every 2 to 3 weeks to 2 to 3 per year. The episodes I’ve recently had are much shorter at around 5 minutes, less intense and respond quickly to GTN.

I belong to a Facebook support group for coronary artery spasm. Many people in the group have become expert patients and I’ve learnt an awful lot from them. We post journal articles and editorials. We love review articles. We discuss side effects of meds, what doses people are on, what triggers episodes etc. My triggers are the cold, relaxing after a period of stress and being very tired.

Since my diagnosis, 2 of my sister’s and a cousin have had very similar episodes of chest pain. None of us smoke, drink or take cocaine which are known triggers. All of us have been told at some point its all in our head and its just indigestion. Interestingly, we all have POTS (postural orthostatic tachycardia syndrome) and joint hypermobility syndrome/EDS.

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  1. Gillian Retallack 10th October 2019 at 8:36 am - Reply

    Could be me ! Admitted to hospital with a suspected HA 6 weeks ago , after a week there , clear arteries in angio, I had another attack ! MR showed Coronary Spasms! Since then possibly as a result of who knows , I now have Myocarditis and Pericarditis plus Pleuritis!
    Still feeling rough! On Dilitazem Colchicine and Clopidogrel plus Avostatin , not helping having Ranitidine withdrawn as I can’t take PPIs .
    Must join this group it’s all worrying and can’t see light at the end of the tunnel !

  2. Peggy Micsky 15th July 2021 at 4:24 am - Reply

    Each story is more knowledge. Seems there is still a lot to learn about
    POTS and many heart issues. Doctors that are open to learning, can. So many different variables to the basics, in life and medicine. A good doctor never stops learning. I think Dr. Gupta is that kind of doctor.

  3. Jodi 30th August 2021 at 3:25 am - Reply

    I was diagnosed in February after suffering 4 cardiac arrests and 5 defibrillations all in one day. I wasn’t expected to live through the night, was on life support, and in a coma for a few days.
    Previous to this, I was diagnosed with heartburn. I now call February 21 “The Day Heartburn Almost Killed Me”.,,

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