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this post was submitted on 28 Aug 2024
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Chronic cluster headache sufferer here. To sum up, I’ve been: Shot, stabbed, shot a second time, broke 7 bones in various appendages, hit with a baseball bat, hit by a car, multiple teeth issues, and migraine headaches, sprinkled for fun.
Basically, I took steve-o’s motto and ran with it (your body is a ride, ride it until the wheels fall off).
None of this comes close to the lightest cluster headache I’ve had. The sheer panic, the knowledge of what’s about to happen, the inescapable amount of pain I know is coming… Fuck CH.
Is there a connection between your lifestyle and the CH? Did one of these cause the other, in whichever sequence?
As far as lifestyle, no, there’s no connection. There are several common triggers of headaches, and trust me, I avoid any and all of them.
I'm an episodic CH sufferer. No other pain comes close in comparison. You're not alone, brother (if I can make that gender assumption given your user name).
Stay strong, brother.
What do you do to get put through all that?
Made light of someone else's cluster headaches in a past life
I just played a lot of sports, some of them extreme (downhill biking). Also, I was born and raised in a truly poor region. And I was just very dumb and tough. And tremendously irresponsible
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”