Leaving this here: "Testimonial of a chronic cluster headache patient after using DMT to abort attacks". @jonleighton of the Organisation for the Prevention of Intense Suffering interviews John Fletcher, chronic cluster headache patient.

JF: I'm 65 years old now and they [cluster headaches] started for me in late September 1973, so about 51 years I've had cluster headaches. […] I came out of a seven-year remission and as soon as I did, I haven't had a break since, and that was 6 months ago. I've been getting at least 10 attacks a day, every day.

JL: Can you tell us a little bit more about the other medical conditions that you're suffering from at the moment, just to give a bit of context?

JF: Besides stage five COPD [chronic obstructive pulmonary disease], I have adenocarcinoma lung cancer. I have achalasia disease, which my esophagus swells up and ultimately causes me to aspirate food and causes bacteria pneumonia. And I've got multiple abdominal hernias from surgery I had 20 major surgeries. I broke my back at the beginning of the year that was caused by severe osteoporosis from steroids, from my COPD. And I've broken my ribs 30 or 40 times in the last couple of years from severe osteoporosis.

JL: How would you compare the suffering due to cluster headaches compared to everything else that you're experiencing?

JF: I wouldn't trade anything for cluster headaches. None of it. Cluster headaches is the worst pain I've ever had in my life. I've never felt anything worse. And, I mean, including being terminally ill and breaking and just so many other really severe painful conditions, but cluster headaches is in a in a category by itself. I've never felt anything like it. It's such severe pain, it's literally violent screaming pain and, to put it bluntly, it feels like you're being murdered. It's unbelievable pain. And you expect to see blood. Telling people about my first attack, I thought I was shot in the head. I thought somebody shot me and I was dying. Every attack pretty much feels like you're dying. It's just horrible, horrible thing. So no, I wouldn't trade any of it for cluster headaches.

JL: And what medications have you tried? And have any of them worked for you over the years?

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Thanks for sharing, Deborah! I'll add these resources to my list of interventions. :)

I'm very interested in what you find out! It'd be great to compare the results of the survey with the predictions of the heavy-tailed valence hypothesis (see here or here).

Thanks so much for your comment!

Actually, someone else brought up this point separately, so I agree there's more to say here. I'd love to dig deeper into this question and possibly write a paper on the topic (e.g. for this collection). If you have literature to recommend (either by you or otherwise), please send it my way. And also let me know if you'd like to get involved in such a project. :)

Gee, not sure what happened there—thanks for pointing that out! I've edited the footnote.

Thank you for your comment, Tim!

Indeed, the choice of e is arbitrary and used for illustration purposes. And the base 6 is simply the choice for which the total burden of CH is larger than that of migraines, so it's also not derived from first principles. This footnote is relevant:

The resulting scaling as $6^x$ would mean that the 0–10 scale would have to span 4 orders of magnitude. While Gómez-Emilsson & Percy (2023) suggest the scale spans “at least two orders of magnitude”, private communication with the authors indicates their central estimates might be closer to 4 orders of magnitude, with uncertainty ranging from 2 to 8 OOMs.

The paper cited also mentions the possibility of a linear relationship for lower pain intensities and an exponential relationship at higher intensities (a "kinked" distribution), highlighting the fact that there are more possibilities beyond a uniform exponential increase. 

I personally don't have a good intuition for what the base should be but might do more work on this specific question.

I'm also not sure what the optimal mapping of intensities for the Russell vs Torelli & Manzoni scales is, also considering the fact that the two studies had different methodologies. I think there's no correct answer, so that was my best guess (though I could also imagine "Very slight" being more intense than a 1.5). Do let me know if you have other suggestions! (Or feel free to fork the code and play around with the parameters. :) )

Hi @Kit! Given your comment, I thought you might be interested in some related research we just published here. :)

Thanks! It'd be great if someone (maybe myself, but ideally someone with more experience in the field) published a summary of the existing literature (more research here). Having spent so many hours reading up on the topic these past few months, I'm optimistic about the efficacy. I think funding and/or running a large scale RCT in particular for N,N-DMT (in a country where it is legal) would be a great use of EA money/time.

I think the EA community has shown incredible initiative in tackling major global health issues, making a lot of progress on problems such as malaria (which causes 600,000 deaths/year) and lead poisoning (which causes 1.5M deaths/year), among so many others. These efforts really show our ability to mobilize resources and drive change when we identify pressing problems.

My hope is that we can direct a similar amount of attention to helping the ~3 million people worldwide who have this terrible condition. Even if my quantitative estimates of the burden of pain were off by an order of magnitude, the situation would still be tragic (and, as @algekalipso has pointed out, somewhat analogous to times when anesthesia had already been invented but not adopted, given the promise of low dose psychedelics¹). I think it would be an incredible success story for our community if we managed to eliminate (or at least significantly reduce) this source of enormous suffering. If you’d like to contribute in any way—either with time or funding—please get in touch!

¹ Coincidentally, when I asked Claude to estimate the lifetime prevalence of undergoing major surgery without general anesthesia before it was invented, its initial guess was surprisingly similar to the lifetime prevalence of cluster headaches—0.2%.

Done! Thanks for sharing this!