The above image was done in oil pastel on paper.
Cluster headaches are a living nightmare. Mine have been in remission for two years and recently they came back intensely. During a headache attack, blood vessels in the brain dilate, crushing the trigeminal nerve. The autonomic nervous system goes haywire. It's one of the most painful conditions known to medical science. From a 2020 study:
A total of 1604 cluster headache respondents were included in the analysis. Respondents rated cluster headache as significantly (p < 0.001) more intense than every other pain condition examined. Cluster headache attacks were rated as 9.7 ± 0.6 (mean ± standard deviation) on the numerical rating scale, followed by labor pain (7.2 ± 2.0), pancreatitis (7.0 ± 1.5), and nephrolithiasis (6.9 ± 1.9).
Each attack lasts from 45 minutes to 3 hours, with most of mine falling into the 1-2 hour range. During that time is torture. All I can do is try not to scream or thrash around too violently. Eventually, the worst passes, leaving soreness and exhaustion in its wake. Then it happens all over again a few hours later.
The current cluster is the worst one I've had to deal with in a decade. My last two headache cycles, in 2022 and 2020, were more manageable, with just one or two moderate attacks per day. This time around, it started with getting woken up from deep sleep here and there by the headaches, and has progressed to having several hours of back to back attacks every day.
Fortunately, I do have a safe space to deal with this in. Me and a little dog are holed up in an apartment and the dog doesn't mind if I pace and tremble and choke and groan. When the pain gets too intense, I inhale high-flow oxygen. This helps, but I'm trying to ration it.
I have just 80% of one tank left and the stuff goes quick. Once it's gone, getting more medical oxygen can be beyond inconvenient. To obtain the gas I have, I had to do 3 doctor visits and pick up my tanks in a suburb nearly an hour out of the city. The process took months. I'm hoping I can just go back out to the distributor and swap my empties for full gas canisters when the time comes, but I've got a feeling it won't be that simple.
Despite the illness, I'm so far managing to keep up with my work. I have everything I need and a partner supporting me. I know I'm resilient enough to get through it. But wow, cluster headaches are rugged. They reduce your whole existence to animal trauma.
It's impossible for most people to grasp how challenging this condition is. For a long time I felt alienated by their misunderstanding, but these days I sort of just see them as children who are better off not knowing the actual contours of the horror I live with. Most people will never get it, but those closest to me understand it well enough. In truth I wish I could do more to protect them from it.
There's no way to know how much longer this cluster will last. I'm hoping the worst passes within a couple of weeks, but it might go on much longer. There are a million other things I'd like to be doing, but they'll have to wait until I'm not being tortured all the time. For now, I'm totally focused on the present moment, grimly determined to continue meeting my basic obligations even though my brain keeps going haywire.
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