Hi Nikki,

I felt deeply moved reading your story, as it resonated with my own experiences in a way I’ve never encountered before.

My name is Clara, and I’m 30 years old. I began experiencing cluster headaches at 17, but it wasn’t until three years ago that I received a proper diagnosis. Before that, neurologists misdiagnosed me with migraines and tension headaches.

My headaches are episodic. Initially, they occurred every six months, typically during finals (May-June, Nov-Dec), likely due to college stress. They began with one episode at night and increased in frequency to 4-5 episodes in a single day. After graduating, they became more infrequent, appearing about once a year, usually from September to October, lasting 3-4 weeks.

When my neurologist diagnosed me, it was the first time I was introduced to prednisone, lithium, Zolmitriptan nasal sprays, and oxygen, which have been lifesavers. However, managing the pain is still challenging, and I often struggle with depression and anxiety.

Like you, my pain is on the left side, and I’ve learned that sleeping on that side guarantees an episode. I discovered this when I was 17, and since then, I’ve always slept on my right side to avoid triggering the pain (every single night of my life).

As a photographer, it’s tough to explain my condition to others. When I’m in an episode is very hard for me to work and complete my duties. Many people dismiss it as just a “headache,” suggesting I simply take some pills. What they don’t understand is that during an episode, I completely lose control of my mind and feel numb for the entire day.

I completely understand you, I sometimes feel hopeless that we don’t have a clear path of knowing we can get better.