I’m not convinced that the number of sufferers isas high as claimed. In 13 years as a doctor in Uganda and treating a few thousand patients, I’ve never seen a convincing case of cluster headache here.
This is indeed quite surprising! The relatively low prevalence and the lack of recognition of the disease /​ misdiagnosis may explain it to some extent, but zero patients in 13 years is still very surprising.
(Consider that even an average neurologist only ever sees a few dozen CH patients during their entire career. I asked Opus 4.5 and Gemini 3.0 to estimate how many CH patients an average neurologist in the US sees per year, assuming an annual prevalence of 1/​2000 adults, and their responses were 1–2/​year and 1/​year, respectively. They also think that the average neurologist sees 3–5x (5–10x resp.) more CH patients than the average primary care doctor, but the odds of not encountering a single patient in 13 years should still be very, very low. Will look into this!)
Also, there’s almost no epidemiological data on the prevalence of CH in African countries, so the prevalence error bars are large. (In our paper, we included a sensitivity analysis of the most uncertain variables to add some nuance.)
Nice response—i wouldn’t take my experience too seriously. i only work part time as a doctor (i run an org) and i could well just have encountered missed the one or two patients with cluster headache. if prevalence is one in 2000 and I’ve only seen a few thousand patients i probably just missed the guy lol.
I probably shouldn’t index off my own experience so much either.
interestingly though there are a lot of conditions with wildly different preference around the world and we don’t understand why.
Thanks for the shoutout and for the vote! :)
This is indeed quite surprising! The relatively low prevalence and the lack of recognition of the disease /​ misdiagnosis may explain it to some extent, but zero patients in 13 years is still very surprising.
(Consider that even an average neurologist only ever sees a few dozen CH patients during their entire career. I asked Opus 4.5 and Gemini 3.0 to estimate how many CH patients an average neurologist in the US sees per year, assuming an annual prevalence of 1/​2000 adults, and their responses were 1–2/​year and 1/​year, respectively. They also think that the average neurologist sees 3–5x (5–10x resp.) more CH patients than the average primary care doctor, but the odds of not encountering a single patient in 13 years should still be very, very low. Will look into this!)
Also, there’s almost no epidemiological data on the prevalence of CH in African countries, so the prevalence error bars are large. (In our paper, we included a sensitivity analysis of the most uncertain variables to add some nuance.)
Nice response—i wouldn’t take my experience too seriously. i only work part time as a doctor (i run an org) and i could well just have encountered missed the one or two patients with cluster headache. if prevalence is one in 2000 and I’ve only seen a few thousand patients i probably just missed the guy lol.
I probably shouldn’t index off my own experience so much either.
interestingly though there are a lot of conditions with wildly different preference around the world and we don’t understand why.