My story with Prinzmetal (so far) - 28 years old female

I was running for three days in a row and started feeling strange. On the third day, a severe pain suddenly struck my chest and back. It was so bad that I could barely make it home.

From that night on, I was in the ER almost every day for five days straight with excruciating pain. Every test came back "normal," yet I could barely walk.

After spending countless hours researching, reading medical papers, and using ChatGPT, I became convinced that I had microvascular angina (Cardiac Syndrome X). I found one of the few doctors in Greece who could perform invasive coronary function testing and pushed for the procedure. He agreed, although he didn't believe I had it.

Two weeks after the pain started, I underwent an angiogram with an acetylcholine provocation test. During the procedure, the doctor kept telling me everything looked perfect and that it was probably stress, anxiety, or fibromyalgia. But when he administered 100 mcg of acetylcholine, everything changed. The staff were visibly surprised as I developed a coronary spasm and significant symptoms.

I was diagnosed with endothelial dysfunction and Prinzmetal (vasospastic) angina.

The problem is that many things still don't add up.

My pain doesn't last 5–10 minutes. It can persist for hours or even all day. Sublingual nitroglycerin doesn't seem to help. I get pain while walking and exerting myself. Diltiazem has changed the nature of the pain, but it hasn't made it disappear.

My doctor insists I don't have microvascular angina, but I don't understand how he can be certain. He never performed adenosine testing, and many of my symptoms seem consistent with microvascular dysfunction. I also don't know whether I have a myocardial bridge because that was never properly discussed.

What makes everything even more confusing is that I don't fit the typical picture. I'm thin, fit, don't smoke, rarely drink, and generally live a healthy lifestyle. So what caused this?

The only thing I can point to is my thyroid history. I had a thyroidectomy in 2022 because of Hashimoto's disease. Afterward, I was hypothyroid for a long time. Then one doctor increased my levothyroxine dose and I became hyperthyroid for about seven months. A month before all of this started, another doctor lowered my dose and I swung back into hypothyroidism within a few weeks.

Could that rapid hormonal shift have contributed to endothelial dysfunction or vasospasm? I honestly don't know, but it's one of the few explanations that seems plausible.

Looking back, I also had episodes of chest pain and palpitations about five months before all this. At the time, multiple doctors told me they were panic attacks. Now I'm not so sure.

In the end, it took roughly 20 doctors, 15 ER visits, and around €6,000 out of pocket for me to get a diagnosis that I largely had to push for myself.

I'm grateful I finally got some answers, but I'm not satisfied with the care I've received. I've learned more from research papers, online communities, and my own investigation than from my doctors. I plan to seek additional opinions because I still have unanswered questions and ongoing symptoms.

If you've been diagnosed with Prinzmetal angina, coronary vasospasm, microvascular angina, endothelial dysfunction, INOCA, or a related condition, I'd love for you to join this community and share your experience. Maybe together we can help each other find the answers and support that many of us have struggled to get.

You're not alone. ..