My headache story

My headache story – Part 3: Cluster headache diagnosis

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In this series of posts I try to describe my life with the beast as accurate as possible. Click the links below to read the previous parts of my story. In this post I write about how I got my cluster headache diagnosis


Diagnosis: Cluster headaches

At the end of the previous part of my story I walked into my GP’s office because I’d been having two daily attacks for a week. The way I described my headaches didn’t prompt the doctor to think of cluster headaches, but nevertheless she referred me to a neurologist at a local hospital. The next week I could already see him.
The neurologist did make the cluster headache diagnosis immediately, and cynically added:”It’s a rare disease, at least you can feel special.” He prescribed 120mg of verapamil as maintenance medication and sumatriptan injections for acute treatment of attacks.

Briefing about the diagnosis

The next week I returned to my GP to discuss what it meant to be diagnosed with cluster headaches. During the week she’d seen my brother who described to her how I look while having an attack. When she heard that description she also thought it was cluster headache. I tend to underestimate how I act and how severe the pain is when describing it to other people. During the week after my diagnosis I did my own research on cluster headache and sadly came to the conclusion that little is known about it. It’s still is a relatively obscure condition and I think the wikipedia page is pretty accurate in describing what it’s all about. Anyway, the doctor explained what cluster headaches are and unfortunately added that it could only become worse. And that is exactly how it turned out (more on this later).

First injection

A couple of months later the time was there when I usually had attacks. And sure, the beast was at my door once again, but something was off. That first attack since I had been diagnosed didn’t come at 9.15 AM. No no no, it was a Saturday afternoon when I first put the triptan pen on my upper leg. I went to the bathroom to do the shot, but I hesitated to actually press the button and ram a needle in my body. There’s a threshold to overcome when piercing your own skin like that. Rationality took over and I decided that a little prick couldn’t be worse than the horrible pain the cluster headache was causing, so I pushed the button. Two minutes later I felt the triptans doing their work. Sumatriptan causes the blood vessels to shrink. At first I felt that at the back my head, as if my brain was shrinking. A very strange feeling the first time it happens. Additionally I had tingling fingertips and my upper arms and legs felt heavy. These effects lasted for about 25 minutes, but the miraculous thing is that the pain is gone after just 5 minutes. This truly is a wonder drug, unfortunately limited to 2 shots per 24 hours.

Broken clockwork

I still was faced with attack periods, but they were no longer like clockwork. Ever since I started taking verapamil the attacks just seem to come at random times. Because I kept getting attacks I payed the neurologist another visit. He decided to up the dose of verapamil, I can’t remember how much anymore. This scenario kept dragging on for a few years, in the mean time the neurologist added topiramate to my prophylactic treatment plan. But to no avail. The same old song kept repeating: change in medication –> fine for a while –> cluster returns –> change in medication –> repeat. Also the neurologist was at the end of his knowledge so in 2010 I looked for help at the department of neurology of the academic hospital in Antwerp.

Stay tuned for the rest of my story. As always: feel free to use the buttons below to share this post with your friends.