Telling my dad’s story

[Debra]

I recently heard about your organization on NPR and was immediately drawn in when I heard the words “cluster headache.” It’s rare to hear about this condition, and as soon as it was mentioned, my ears perked up. Other than my dad, I’ve never known anyone else who suffered from this debilitating condition, which is why I felt compelled to share his story after hearing the NPR segment.

My dad was a strong, tough man—a former Marine who served in WWII. On the outside, he was all grit and determination, but he had a soft heart, especially when it came to his family. He loved his life and the people in it, and he rarely complained about anything.

From what he told me, his cluster headaches began when he was 22 years old. The pain was excruciating and would nearly knock him off his feet. It was always the same side of his head that was affected, with that side looking flushed and reddish, while the other side appeared normal. During an episode, my dad had to retreat to a dark room, sitting upright because lying down only made the pain worse. The headache would eventually pass after about an hour, but it left him drained.

My dad’s headaches were cyclical. He told me they would return every 18 months, like clockwork. Despite the immense pain, he never complained or wanted to burden anyone with his struggles. But these headaches were one of the few things that truly brought him to his knees.

At 60, my dad was diagnosed with metastasized lung cancer. He underwent chemotherapy and radiation, and remarkably, he survived until just before his 65th birthday. He was an incredible fighter, enduring everything with the same quiet strength he had always shown.

What stands out to me, and what I wanted to share, is that from the time he began cancer treatment until his death, he never experienced another cluster headache. Listening to the NPR report made me wonder if the chemotherapy or radiation somehow alleviated his headaches, and I thought it might be worth sharing this information with your organization. 

[CHfather]

It's a great story about a brave, brave man.  It is remarkably true of people with CH that, as you say, they resist burdening anyone else with their struggles.  

It's also a sad story to me, because even then there were treatments that could have helped him, but it sounds like he got nothing from his doctors (another common theme for CH).

Thank you for taking the time to write to us.  I might be mistaken, but I think there has been at least one other person who experienced remission after cancer treatments. 

[Bejeeber]

Thank you Debra, information like this is always valued, and when included in a story like this, very touching.