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Hi there, 10 years ago I discovered this website and made a post here after experiencing pain abortion via psilocybe semilanceata use. Back then this board helped me understand so much better how to manage my CH cycles and attacks than any doctor ever did. So just for that, thank you! As a funny story introduction, I have to tell you how I discovered the use of psychedelics for CH; After being diagnosed by a dental surgeon, I was talking about it to a friend, which told me "CH? like in Dr House episode with the mushrooms?" - this is what originally brought me to this website Now without going into every single detail of what happened to me in the last ten years, I wanted to give a brief update on my journey, as I realize that the knowledge built on this site is for a big part generated by anecdotal information, here's my humble contribution: Ten years ago I ended a cycle successfully for the first time using mushrooms. I was amazed and spent the next months reading everything I could as why this is happening. And while I dont have a real answer, my vulgar understanding is that CH are like a brain that had his road map messed with and mushrooms reset it to factory settings During that period I was trying to abort individual attacks with originally coffee, mushrooms in very small dose under my gums and tongue, and breathing exercises. However I quickly replaced coffee with lemon juice as vitamin C seems to fast track psilocybin. Anyways, after that cycle, I prevented successfully many cycles for many years using psilocybe semilanceata that I religiously pick myself every year. Meanwhile I have tried to get prescription for oxygen for years (in the fear that an attack would eventually show up) but always unsuccessfully. However, about 3 years ago a cycle started again, still not sure as why, I was traveling a lot back then and messed up my sleep cycles regularly, this could be the reason, I was also drinking alcohol more than usual, i'm still not sure what exactly happened but it did. So, I went to the doctor, reluctantly I have to say, because I still have bitter memories of what doctors made me go through prior to me discovering mushrooms for CH. Anyways, the doctor discovered that I had high blood pressure, and while he wasn't really acknowledged about cluster headaches he wanted to treat my blood pressure, which he said would likely reduce the intensity of the CH attacks too. And so he gave me isoptin (calcium blocker) and an alpha blocker, in low dosage. This did indeed greatly reduced the intensity of the attacks and fixed my blood pressure. He also prescribed me an abortive nasal spray, Imigran (sumatriptan), which I never took because I wanted to break the cycle with mushrooms anyways and i'm very sceptical by now about migraines medecines for CH. I then managed to break that cycle by doing the mushrooms protocol, took 0.5g then 5 days, 1g and 5 more days and it stopped. I went on with my life, I became a father even! 2 years went on, dosing according to the calendar and no pain. But as every father with a toddler in kindergarten, I eventually got a terrible flu, that turned into pneumonia, and therefore went to a doctor, who prescribed me steroids, which got me pretty intense.. but when I came off the steroids, omg.. the CH came in raging like I forgot how terrible these could get! 3 to 5 attacks per day and brutal and long ones! my partner couldn't stand seeing me that way and called my doctor and went on to give me the imigran nasal spray; in the midst of an awful attack I took the spray and within 20min it stopped. I was relieved. So after that I was taking a spray if the attack was getting out of control.. well.. little did I know, the attacks were coming in even more regularly and stronger than ever (if it's possible at this point..) One night I had an attack that just wouldn't stop and my partner called an ambulance to beg for oxygen, but I was too far gone and they probably didn't give me the oxygen like I need it, it was a nightmare, I ended up in the hospital hallway strapped on a bed begging to be killed and screaming at them that they better not give me opioids (because i had previous horrible experience with those before and they do nothing good to me). I eventually made it back home, absolutely beat. During a short period pain free I went online and looked up imigran and CH etc, and realized that it was a terrible mistake. So I decided not to take it anymore and rather either raw dog the attacks or bust them with mushrooms. And here we are today, no imigran for a week and two doses of mushrooms in, I had one strong shadow this morning, no attack yesterday, I am not holding my breath but it feels like I might be close to break the cycle! That's my update, hope it is useful to some. Oh btw, I just read recently about using DMT vape as an abortive and it seems insanely efficient! i'm currently looking into getting the mimosas bark to make my own. If any of you have info on this I am very interested! Thank you all for contributing to make our lives better, stay away from sumatriptan, stay away from steroids, I wish you only the very best <3

We have been saving them from the Detroit streets for 17 years. Ten of them!

Hi! I don’t have any real data here but I too noticed my cycles were linked to my hormones. When I first started getting CH back in highschool it was always during my placebo week of my birth control, which was an estrogen pill. When I switched to other kinds I noticed the pattern of headaches would always be around the time of my period. I took myself off birth control maybe 7 years ago now. My last CH cycle was last year. I started getting them yearly or bi-yearly around fall/winter instead of in relation to my cycle. I use vitamin L maintenance routine to keep the headaches away but I do notice shadows right before my period begins. So I do think the two are linked for me! I have also read a few other people who had similar experiences. That being said, I’m not sure what to do with this knowledge, but it is interesting that many women experience that! I just started seeing a functional medicine doctor to get full labs on my hormones, etc. and will share if I fine anything helpful!!!

Well, they were probably just guessing about it being helpfull for autistic children or being a cure for homosexuality

I found this yesterday, and filled out the survey.

During recent research i found this picture. so weird that we are using a so called counter culture drug that was created as a medicine for our disease/disorder and was made illegal in the 60ies. and nowadays everybody seems to be forgotten that it was like that. mind blown!

Hi all. I used the search function to see if this had been shared on the forums already, I couldn't find anything. Australian headache researcher Dr Faraidoon Haghdoost has obtained funding for a clinical trial into the potential for psilocybin to prevent disabling cluster headache, funded through the Novel Treatments and Management Strategies for Chronic Pain stream of the Australian Medical Research Future Fund (MRFF). The trial is called the ‘Psilocybin Efficacy and Acceptability on Cluster Headache Episodes’ PEACE Study. Faraidoon has put a request out to any Australian Cluster Headache warriors that would be prepared to talk about their journey with the disease to help raise awareness, I quote from his recent post on Big Head Pain on Facebook. If you are a CH warrior in Australia or know someone that is whom may be willing to have a chat with Faraidoon about getting involved, please reach out to him at the links below. Seeking a Person with Cluster Headache for a Media Interview (Plus Big Publication News!) I’m excited to share that our manuscript, “Patient Perspectives on Research Gaps in Cluster Headache”, has been accepted for publication in Headache journal! This work is deeply rooted in patient experience, and we’re thrilled to see it moving into the academic and clinical space. As part of sharing this milestone, we’re organising media interviews to discuss the findings and raise awareness of cluster headache. We are looking for someone living with cluster headache in Australia who would be willing to join one of these interviews - including sharing their name, photo, and personal experience, if comfortable. Your voice could make a real difference in helping the broader community understand the condition. If you’re interested - or would like more information before deciding - please comment below or message me privately. We’d be very happy to include someone from our community in these interviews. Thank you all for your ongoing support and for continuing to strengthen this community. More about the study: https://www.georgeinstitute.org/news-and-media/news/hope-for-cluster-headache-community-as-psilocybin-trial-funded Big Head Pain Facebook group: https://www.facebook.com/groups/3085334835045020 Email: faraidoonhaghdoost@gmail.com

Hey sir, A bit late to the party on this response, but I wanted to follow up. First, thank you for your service! I spent time in Kyrgyzstan, UAE, Kuwait and Iraq throughout my 11 years. Worked nukes when I was state side up in Montana. Oddly enough, I was rated 50% but there were a few things going on that were all connected. Overall, it was a culmination of both the clusters and the insomnia(which i started having when I forward deployed to Iraq). I hope you don't mind me asking, (feel free to message me privately as well), but was your 30% for the headaches alone, or is that 30% WITH your PTSD as well?... Because if so, that seems exceptionally low.

The range for normal depends on the country and the lab. Quest offers a range of 30-100ng/mL however the specific regimen you may read about here and on other platforms for CH prophylaxis targets a vitamin D blood level of 80-100ng/mL for episodic, the upper limit for Quests range for normal and slightly above that for chronic CH. Enjoy the watch and hopefully a pain free holidays ahead.

One kitty is for wusses.

....not aware if high or low estrogen is a CH trigger....my PERSONAL belief is that changes to routine or body chemistry CAN be. mayhaps a discussion with physician to ramp up the estrogen a bit more slowly. i also note that an amazingly high number of medication side effect warnings suggest the exact reason for taking the med (headache for example) as a potential side effect. a bit frightening until you consider you affecting the system or chemistry that is causing you problem. sorry if thats a little "what?...hard for me to explain things these days... best jon

Update. 3 days ago I started a small amount of topical estrogen replacement and today have had a CH attack. It was a minor one but definitely the kind of thing I would experience at the start of a cycle. Yet Google tells me the opposite should be true, that CH are more likely with low estrogen levels ?????

Many thanks!!!

Hola Luis, solo hablo un poco de español pero quiero ayudarte. Para comencar es muy importante de seguir la recomendacion del manuel. Se recomienda tomar todos los suplementos como se describe en la guía de inicio D3 Quick Start Guide - BATCH - Sept 2023.pdf

Hola yo tomo vitamina d3 como suplemento. Con eso es suficiente? Gracias!

What country are you based in please?

Appreciate your feedback and thank-you for your kind words snafu!

i get the thought behind this and commend you for your efforts with taking over the reigns with the vitamin d3 protocol and education about it. But this AI slop is garbage and unwatchable,imho.

Hi all. Here is a 10 minute explainer video utilizing AI to generate some pixar characters of myself and Pete Batcheller to offer an introduction and "flight briefing" of the Vitamin D Regimen, a patient led preventative treatment protocol for Cluster Headache. For more information on the regimen I know there is plenty on information in the forums here and the guides, interviews and other Vitamin D videos can be found over at www.vitamindregimen.com

Bob, Gary, Matt and Anna with the TAC committee at AHS (American Headache Society)

https://youtu.be/AtoxkK7MeKc?si=vOCKVT0zIXsauhF8

I just wanted to give an update. Bob and 3 of us on the board attended. We had tons of good meetings- just the amount of respect I saw regarding Clusterbusters was huge - from pharma to headache specialists...we have an amazing reputation. Got to see and hear Dr. Schindler, Dr. Burish, Dr. Nahas, and others present. Hopefully some more promising research coming down the pipeline!

Hi all, Didn’t want to post until I had at least 2 years no head aches. Found success with the below. Used to get headaches 2-3 times per year, lasting 7-14 days 2 attacks per day for 4 years. triggers WERE- red wine, excess sauna (dehydration) and changing time zones ie when I came home from over seas. 1) Initially micro dosed psilocybin daily then took 1grm every 1-3 months as a slightly bigger dose. Did this for a year. Helped the severity and duration. I did stop this after 1 year. 2) PROPER hydration (not just drinking more water). Added mineral supplementation for actual water absorption. *stay away from tap water*. Diatomaceous earth 2x day + Celtic sea salt (1 pinch with every single glass of water) + Irish Sea moss for minerals. We don’t get these trace minerals in our foods/ soils and definitely not our water supply any more. Plenty of coconut water too. Once consistent with this I found a massive difference. I truely believe I was chronically dehydrated. 3) Fascial manoeuvres to stretch and hydrate bodies fascia around head/ neck/ face and jaw. Check “Human garage” on YouTube or online they have some amazing routines for head aches and general wellbeing. All for free. May not work for all but for a natural, low cost and low effort routine - give it a crack !!! Wishing everyone all the very best !

Support Groups this Week Needing support? We have a group for you! TUESDAY: Do you live in California? Join Tuesday 7pm PT - message Clusterbusters or anna@clusterbusters.org for an invite link WEDNESDAY: Care Partners! Join Julia at 7pm ET - Register here: https://us06web.zoom.us/meeting/register/8AQ75ckZQn-ddzoYfreZbQ 8pm ET join Joe Stone - sign up here for the 2nd Wednesday of the month meeting: https://clusterbusters.org/get-support/ THURSDAY: Do you live in Texas? Join the Texas group by emailing gary@clusterbusters.org for an invite- it meets at 7:30 CT SUNDAY: Do you live in New Zealand or Australia? New Zealand: 6pm Australia AEDT: 4pm Australia AEST: 3pm Join Craig by registering here: https://us06web.zoom.us/meeting/register/jBEVM84QRs-RP6lgNdFCmw *You do not have to live in the region of the group to join.

Thank you