Chronic2017

I still maintain that I discovered the cause back in late 2020. If you care to glance at the theory, research, and treatment plan you may want to check out this post. Nothing worked for me either until I discovered this and created a treatment plan the treats the actual cause. I went from 3.5 years of being chronic to now, where I mostly lead a normal life. Every once in a great while I'll get a shadow and have to stick to the treatment plan more diligently. I hope this is helpful to you.

BoscoPiko, you may want to look at this thread:

Yes, it's still helping me. It takes about a week to fully kick in and start having a noticeable effect. Be aware that it does have a very long half-life of 60-100 hours, so if your husband stops taking it at any point, it will take a week or 2 to fully clear his system. Another word of caution - do NOT bust while taking memantine. One of it's effects is that it reduces or resets any drug tolerances. I found this out taking 3 grams of mushrooms and had an unplanned level 5 trip with a full on break from reality - the experience was on par with descriptions of 10-15 gram trips. Thankfully I didn't do anything bad, but it scared the hell outta my wife (and me). We never fully figured out if it reduced busting's effectiveness, but it may very well interfere with busting. Since this happened, whenever I've busted, I wait 2 weeks minimum from my last dose of memantine. Please be extremely careful if considering busting while on memantine!

A family member just mentioned they heard Oregon Health & Science University (OHSU) is doing a study with Psilocybin and Cluster Headaches. I haven't found anything yet, but I'm still digging. Has anyone heard anything about this?

Welcome and sorry you have to be here. Hopefully we can help you out. Do you have Oxygen to abort attacks? The next thing I'd suggest is looking up Batch's Vitamin D3 regimen and start that asap. It's most helpful if you follow all of it, not just the Vitamin D. This helps a lot of us as a preventative. And finally, are you familiar with busting (if in cycle) or dosing with magic mushrooms as a preventative? I find there isn't one specific thing that reigns in the beast, but when using especially the Vit D and MM in combination, I can usually keep them under control and completely manageable. Hope this helps C17

I busted this past weekend and about an hour in got hit with an attack. Weird thing about this attack is that it felt as if the entire right side (same as my clusters) of my body was "locked up". It's the only time I've felt such intense pain in my arm (or any other part of my body) that even comes close to a cluster. There was a wood stove going where I was at and it was all I could do not to walk over and lay my arm inside of it. The time dilation effects of the busting made this 3 hour attack feel like an eternity. I've used capsaicin in my nostril on the side I get attacks and it usually does a pretty good job of ending an attack within a few minutes. It stings, I'd say maybe a 7. I used it right at the beginning of this attack and literally couldn't even feel the burning sensation from the capsaicin because the attack was so bad. I was thinking about posting another thread because I was wondering if others have ever had the "full body" attack before, but then saw this one. Glad I'm not crazy. Any ideas on why this can happen?

I just realized this was posted a while back - Milelli where you able to give the talks?

Hopefully with the stress of giving a talk, it'll keep the beast away. Relaxing is a trigger for many, so maybe being a little nervous will have the opposite effect.

You may want to repost this to the Busting board for privacy. I think you'll get more responses there.

My understanding is that a person can go unconscious from a rapid increase in pain as it drops blood pressure. I have a sister in law who passed out slamming her finger in a drawer, but I don't think she got anywhere near a 10. A slower increase avoids this effect, so you remain conscious. During a 10 I remember thinking a primitive version of "how is this much pain even possible?!" I say primitive because even that short of a thought isn't really possible during a 10

Usually busting is using mushrooms, LSD, or seeds.

I know this is an old thread but figured I'd share in the hopes that it helps someone. I've had CCH since July of 2017, went through the whole routine verapamil, O2 nothing worked well. In Spring 2018 was put on Memantine and it has noticeably helped. Side effects for me are actually positive as it greatly reduced anxiety at work, other than that no side effects. Currently 20mg a day.