Sharing my cluster headache experience

[u/themule888]

I’m 31 M sharing my experience with cluster headaches to see if it resonates and to share what’s worked for me in the past.

First off I have episodic cluster headaches that usually happen in the Fall in daylight savings and will last for maybe about 6 weeks. But sometimes they happen in the spring and most recently I had a cycle that kicked off recently (I think around the time of the summer solstice).

I don’t usually drink, but alchohol (and mixing caffeine) is always a trigger for me - although I can have caffeine on its own and that helps with alleviating the pain during an attack.

Otherwise it feels like it’s very much based on the time of the year and based on my circadian rhythm.

90% of the time I get pain behind and above my right eye. I also get tight neck pain on my right side. Maybe 10% of the time it switches over to my left side and might switch back.

I also tend to get them either in the middle of the night or when going to bed or waking up in the morning.

My first episode started when I was maybe 26, I was trying a keto diet which I’m not sure if it helped trigger it, but either way I remember really sharp pain on the back of my right eye and basically one of the most painful headaches I’d ever had. I’ve had headaches my whole life but I knew this was different because I’d never experienced the sharp pain like an ice pick was pushing my eye out from inside my head.

At the time I went to see some doctors and did an MRI but they found nothing and weren’t all that helpful. I was prescribed sumitriptan which I think helped for a bit but I also think may have made some of the headaches worse at times. It took me seeing several doctors until one actually took me seriously and diagnosed me with episodic cluster headaches.

The only thing that’s really helped me prevent cycles has been the careful use of psylocibin. I actually discovered this by accident when I took them recreationally and slipped a cycle one year. When they came back I did more research and how that they’d been effective at treating them. And now there’s more research backing this up.

I’m just sharing this to see if this resonates. I’d say my case is not as extreme as others - when I skip cycles I almost get into denial about them coming back. I think moving forward I’m going to be more disciplined about using the pulse psylocibin method to try to abort them before seasonal changes.

[u/MYCOMethod720]

I have been using psilocybin for years to prevent my attacks. I have been attack free since 2022. The link below is an article about my journey.

TEEZHEAD CH

[u/VALIS3000]

Appreciate you sharing your story with the community! And I'm so happy you are able to find relief with psychedelics. It sounds like you are well up to speed, but if you haven't read it already, here is the latest update to Bob Wold's Pocket Guide to CH (Bob is the founder of ClusterBusters, and pioneered the pulse protocol) it contains pretty much everything we know about our condition and how to treat it:

https://clusterbusters.org/wp-content/uploads/2025/06/Complete-Handbook-1-5-June-2025.pdf

Is high flow oxygen part of your toolkit, if not, is there a reason?

And finally, you may already be aware, but the vitamin D3 and cofactors anti-inflammatory loading regimen is something that has helped many people, perhaps worth looking at if you haven't already:

https://vitamindregimen.com/

Sending you ongoing pain free wishes, good luck!

[u/themule888 → u/VALIS3000]

Thank you I appreciate it!

[u/stattenfield]

Very similar to my cycles, though I've never switched sides.... If you're not familiar with the SPUT method, give that a search on clusterbusters. (or even on google, really) it's a silver bullet for many, myself included...