My Cluster Headache Journey
My cluster headache journey — almost 40 years of trying to understand this disease
I’ve been dealing with cluster headaches for a very long time, and I thought I’d share how this all started for me.
My first one was back in the 1980s. I was driving from Washington State to Arizona in the summer and we were going through miles of blooming Scotch broom along the highway.
Out of nowhere I got a headache unlike anything I had ever experienced.
It was unbelievably painful, but it didn’t last very long. Then it happened again. And again. I think I had 3 or 4 attacks over the next few days.
I had no idea what a cluster headache was. I was convinced it had something to do with the pollen from all that Scotch broom.
Then nothing For about 5 years.
Fast forward to the fall, about 5 years later. I remember we had just turned the clocks back. I got another headache that felt very similar to those headaches I had experienced years earlier. Except this time it didn’t go away.
This was my first real cycle.
At first, the attacks were spread out. Maybe one every other day. Then they started increasing. One a day. Then two. Then three. Then five.
Eventually I was getting as many as eight attacks a day.
It took weeks for the cycle to build to that point. The pain and frequency seemed to keep getting worse and worse. Then, eventually, the attacks started tapering off. The whole thing lasted around 4 months. I had absolutely no idea what was happening to me. At one point I honestly wondered if I had a brain tumor. When the cycle finally stopped, I thought whatever strange thing had happened to me was over.
Then the next fall, almost on the exact same date, it started again.
This time the progression happened much faster. One headache a day quickly became two, then five a day. And they just kept coming.
A lot of them hit while I was sleeping or during the night. Others came in the early morning or late afternoon.
I started seeing doctors, trying to figure out what was wrong. Unfortunately, my experience was that they were often treated as if they were just ordinary headaches. They weren’t.
I don’t think there are many ways to explain cluster headache pain to someone who hasn’t experienced it. It’s not just the intensity of the pain. It’s knowing another attack is coming. It’s being afraid to go to sleep. It’s having your life revolve around when the next attack might happen.
This went on for years. Eventually I found information about oxygen therapy.
Oxygen became my best friend. At first I was using a nasal cannula and only 5 LPM. It would abort maybe half of my attacks. The key for me was getting on the oxygen almost immediately, within the first minute or so of recognizing what was happening. If I caught it early, sometimes I could stop it. If I didn’t, I was usually in for an hour or two of hell.
Over the years I kept going to doctors and trying different things, but eventually I realized I was going to have to become my own advocate. I started researching everything I could find about cluster headaches.
After about a decade of this, I eventually became willing to look at treatments outside of what I had already tried, including psilocybin.
I was honestly amazed by my experience with it. I used it as a preventive and ended up having a remission of almost two years.For someone who had spent years having his life dictated by cluster cycles, that was an incredible amount of freedom.
My cycles have generally seemed to come in the fall, and sometimes in the spring. Even after all these years, I still find myself trying to understand why they happen when they do.
Accessing alternative treatments wasn’t easy either. I didn’t exactly have a social circle where this was readily available, so that became another challenge.
I’m not posting this because I think I have all the answers. I definitely don’t.
I’m posting it because I know there are people here who are somewhere earlier in their journey than I am, and maybe someone will recognize part of their own story in mine.
It’s taken me decades to understand what was happening to me. I still have a lot of questions.
But I also have a lot more hope than I did when I was lying awake at night wondering if I had a brain tumor.
Thanks for letting me share my story. THANK YOU for having this forum available as an added resource to the Cluster Attack Survivors.