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this post was submitted on 28 Aug 2024
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Have you ever looked into psilocybin?
https://blog.petrieflom.law.harvard.edu/2022/04/18/small-doses-of-psychedelics-for-cluster-headaches/
https://americanmigrainefoundation.org/resource-library/can-psilocybin-treat-cluster-headache/
It's the best remedy I've tried insofar as it's the only thing that has worked as any type of preventative, and the only thing that has disrupted a cycle for me. It doesn't work as an abortive, in my experience, but it beats every pharmaceutical I've tried in every other way.
Sourcing it has been an issue, and it sucks to open yourself up to criminal offense for not wanting to live in pain, but we do what we have to do.
If you can jump through hoops with doctors and insurance, look into Ajovy. It's the only preventative that helps with my headaches, and it helps really well. But it's an expensive auto-injector and I had to run through several meds that don't work before insurance would approve, and I still need a discount card to help with the copay, but I've had about a 95% reduction in headaches, and the ones I've had were mostly mild and easy to control with Tylenol or at most a triptan.
I have, and I tried one time, about 8 years ago. Efficacy wasn’t what I expected, it took me out of my cycle for about a week. But then I was back on the pain train. Not sure how well it would work for me to be in jail (if I get caught with shrooms) + trying to find a way to pace around in a holding cell. Being such a niche disease I kinda have to hope for pharmaceutical companies to develop proper legal treatment “some day”