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Ηello, I understand how difficult it must be for you, but be patient and faithful. I have had chronic cluster headaches for 10 years. I have tried all the medications, they didn't help, seeds and mushrooms. They do something, but not always for me. In the last cycle, with 2 attacks a day and intense pain, I tried CBD flower from a store that sells it, and for 8 months now I have been completely pain-free and I can even go out without oxygen in the car, something that didn't exist before.

Ηello, I understand how difficult it must be for you, but be patient and faithful. I have had chronic cluster headaches for 10 years. I have tried all the medications, they didn't help, seeds and mushrooms. They do something, but not always for me. In the last cycle, with 2 attacks a day and intense pain, I tried CBD flower from a store that sells it, and for 8 months now I have been completely pain-free and I can even go out without oxygen in the car, something that didn't exist before.

Hi, I'm Stella from Greece. I've had pain for 10 years and I tried mm and lsa sheed to cut the cycle. Sometimes it works and for the last cycle I tried CBD flowers from CBD stores and I've had no pain for the last 8 months since the day I started.

I would think that it's nearly impossible to have a highly effective breathing strategy (full exhale/deep inhale) at 8 lpm. That would be because the bag on your mask doesn't fill fast enough to be full when you are ready to inhale. So it's great that that's working well now, but I think you would be able to make it a quicker abort, and maybe a longer-lasting one, with a breathing process that is supported by a higher flow rate. And I do think a strong cup of coffee will often be as effective as an energy shot or energy drink, particularly if you're not doing much caffeine at other times of the day.

"The pilot ‘Psilocybin Efficacy and Acceptability on Cluster Headache Episodes’ (PEACE) pilot trial will assess whether 10 mg of psilocybin once a week for four weeks compared to placebo can prevent cluster headache attacks. The study builds on early patient reports and small-scale trials that indicate its potential benefits." So that's 1g dried cubensis give or take (0.8 - 1.2g) depending potency every 7 days for 4 weeks, in sort parallels the community busting protocol. I hope they are able to recruit the numbers. I had recently read one of his articles on migraine: Migraine management: Non-pharmacological points for patients and health care professionals He is also the recipient of the 2025 Peter Goadsby Award for Best Scientific Oral Abstract presentation at the Australian and New Zealand Headache Society Annual Scientific Meeting in Sydney on 30–31 August. His presentation, “Gaps in Research and Management of Cluster Headache Through Patient Perspectives,” underscored the need to listen to patient voices and address the gaps that remain in both clinical care and research.

A new clinical trial in Australia has funding approved to test psilocybin as a preventive treatment for cluster headache. The PEACE Trial (Psilocybin Efficacy and Acceptability on Cluster headache Episodes), led by Faraidoon Haghdoost and supported by the The George Institute for Global Health and the University of New South Wales under the Medical Research Future Fund (MRFF), aims to evaluate whether weekly low-dose psilocybin can safely reduce the frequency or severity of cluster attacks. There is also a survey on Faraidoon's page assessing the cluster headache research gaps based on the patients perspectives. https://www.faraidoonhaghdoost.com/post/cluster-headache-trial-got-funded-in-australia https://www.georgeinstitute.org/news-and-media/news/hope-for-cluster-headache-community-as-psilocybin-trial-funded

Re: the caffeine - as long as you’re continuing to experience nice quick O2 aborts, no need to go there with it IMO, but when additional help is needed, here’s a decidedly strange and inexplicable thing: Those of us who have braved caffeine with our O2 for wake up attacks have pretty much universally found that somehow we can still unexpectedly go right back to sleep afterwards!!!!?? 5 hour energy type shots are popular, as they also contain plenty of taurine (which is thought by some to also be beneficial), and of course they contain just a fraction of the sweetener you'd get from an energy drink. I would hope they would also contain only a fraction of the other junk.

Most that stay on O2 after the attack is aborted find that 10 minutes seems to be the sweet spot. My advice is to experiment to find what may work for you best. My personal feeling on rebounds like this (totally unscientific, I'm not a doctor) is that either the attack wasn't fully aborted (comes back quickly) or that it's a separate attack that would have happened anyway (comes back after an hour or so). Who really knows for certain?

Greetings and sorry they are back - it sucks. My one fall from remission whilst using the D3 regimen saw me find o2 and the cluster o2 kit for the first time - I was getting o2 slap backs but as Bejeeber said that’s not bad to have several hours in between nocturnal attacks, I was aborting in 6 minutes or so and getting a slap back an hour later. An amazing advocate in our community Pete McCormick suggested to try staying on the oxygen for the same amount of time it took to abort the attack but at a lower flow rate, when I did that I found an immediate improvement back to my normal 2-3 attacks per night, aborted and back to bed in around the 15-20 minute mark which was an amazing improvement on previous abortives. I only needed the o2 setup for a total of four days before higher levels of vitamin D3 put me back into remission, thank God. Can’t add much about caffeine suffice to say some warriors use a strong black coffee rather than energy drinks and report it works, if concerned / wary about energy drinks, I know I am. I’d just straight hit up the oxygen upon waking rather than caffeine and save a strong black coffee or otherwise for shadows during the day. All that being said and in lieu of challenges obtaining Emgality, is the vitamin D3 regimen an option for you as another tool to add in the kit?

Thanks for the info! Mind if I pick your brain a bit further? 1. "Staying on the O2 longer after the attack is fully aborted...." What's reasonable based on your experience/knowledge? 2. " incorporation of caffeine..." Are we talking like chugging a caffeinated beverage after waking up even though I have intentions of going back to sleep? If yes, what kind of drink are we talking about? I'm weary of drinking "energy" drinks such as monster or other similar products. Thanks for the input!

I've had a similar rebounding experience with O2 aborts of wake up attacks, and have noted others also reporting it enough that it appears commonplace to me. The rebounds can occur as frequently as every hour or so, something I'm personally familiar with. Your 3 hours between rebounds is relatively luxurious, and actually worth savoring from the perspective of some. It could be a good idea to have contingency planning for going with higher O2 flow, and having awareness of advanced breathing techniques and the incorporation of caffeine, just in case your success so far with aborting attacks at 8 liters doesn't hold (I don't wanna go all negative and alarm anyone, but sometimes the 8-10 liters doesn't hold, and beefing things up is required). Staying on the O2 longer after the attack is fully aborted might help extend the time between the wake up rebounds.

Hey Erick, Welcome to the family... and we get it! Just know that you're not alone here and there are ALOT of people here that can help. Many, myself included, hop on here regularly during cycles just to talk, vent, express anger, ask for guidance and ... well, just about anything else you can think of. My worst cycle i've ever had was back in 2018 and I was averaging 6-7 a day. It was brutal!! ... Cycles have been easier since then, but they pain is still debilitating. I'm in a current cycle right now having 2-3 a day currently. I take triptans at night. I was also taking Emgality until my insurance company stopped covering them. Ask your doc about Emgality. It has helped me previously. it seems to lessen the frequency of attacks... and I was JUST recently prescribed oxygen and I received my first tanks last night... i'm experiencing cluster "rebounding" now. I have a forum that I just posted today asking for more info and advice. Overall, we're here for you brother! Reach out anytime if you just want to BS.

Hey Mike, I hate that for you, brother! I get it though.. .Like you, I also kinda disappear from the forums when I'm cluster free. I always find my way back when I go through a cycle though... Like right now... But I wanted you to know that I've had a good amount of success so far with Emgality. I started taking it a little over a year ago and I think it's been working quite well. I still have attacks, but not as many as I would if i was not taking Emgality... Though... Cigna JUST dropped covering it as of last week... Soooooo.... Fun times. Good luck to you though and feel free to reach out anytime! My current cycle is just starting so I suspect I'll be on here frequently over the next few months. Take care,

Hey all! I hope you are all well and relatively cluster free/remission... I have some good news, and some bad news. Good news: After years of asking and pushing for oxygen therapy, I was FINALLY given a prescription! Dr. put me on 8-10 l/m for 5-15 minutes. Bad news: This is two fold. First, my insurance through Cigna is now denying my prescription for Emgality. I've been on it for over a year and it has helped tremendously! Now that Cigna won't cover it any longer, I won't be able to take it. I can't afford $800/shot... Second, (i'm hoping some of can help me out with this one....) the oxygen therapy caused what I'm reading as a "rebound" effect. Can someone educate me further on this? I received my first tanks last night around 6pm. At 9:50pm, I started feeling the initial pain of a cluster coming so I figured it was time to give the oxygen a try. I followed the prescribed amount and started at 8 liters... the pain was gone within about 7 mins! Halleluiah! ... But there's a catch... I woke up in the dead of night around 3am with a hard hitting attack. I immediately went to the oxygen and breathed again the prescribed amount. Same, it went away in under 10 mins of breathing. Went back to sleep... Sure as shit, 645am comes along and I wake to ANOTHER cluster. What happened?! Up until last night, i was having avg 2 a day: 1 shortly after lunch time frame and another just before bed(9-10pm). I've had attacks in rapid succession before in the past, but it's been a long time! The worst cycle I've had was back in 2018 time frame and I peaked at 6-7 attacks/day... I haven't had attacks in rapid succession like that since then. I did a quick google search this morning and briefly read something on the "Google AI" that cluster rebounding can occur with oxygen therapy. I decided to post on here to gain additional information. Thoughts? Suggestions? Past experience?? *Side note* ... Is Oxygen always that cold coming out?! Yeesh!!

Last autumn/winter we ran a survey to gather data on human suffering from a range of conditions and experiences, and you were kind enough to participate by reflecting on your own suffering and providing responses, for which we are grateful. Some of you gave detailed descriptions, all of which were read. We have now finished analysing the data and have written it up in a new post on the Effective Altruism Forum, which you can find here: https://forum.effectivealtruism.org/posts/hTGScBoBDKwmAcGP6/how-to-quantify-global-human-suffering-results-from-opis-s We included some of the text descriptions, which convey a sense of what some of the suffering is like, beyond the numbers. Of course there was no identifying information disclosed. We plan to submit a reworked version to an academic journal, making the case for suffering metrics and for a larger survey that builds on what we learned from this first one. Our goal is for the prevention and alleviation of suffering, and especially severe and extreme suffering, to become a top priority of our governments at all levels. If you’re interested, you can also have a look at our recently published Compassionate Governance: A Strategic Guide to Preventing and Alleviating Global Suffering. Many thanks again, and wishing you to be free of suffering, Jonathan

Clusterbusters Executive Director and some board members will be in Scottsdale, Arizona this week. First a CHAMP Coalition meeting and then the American Headache Society Meeting- many of our favorite clinicians will be speaking! Looking forward to hearing updates and getting more ideas of ways to help our community. https://headachemigraine.org/coalition/ https://americanheadachesociety.org/events/2025-scottsdale-headache-symposium/agenda

Another review on this subject published a few days back.. A review on gut microbiota and migraine severity: a complex relationship Noha M. Gamil, Rana M. Ghorab, Reham Z. Elsadawy, Nada M. Khadrawy, Mohamed Abdelhamid, Khalid A. Ismael, Omar A. Mohamed, Mohamed M. Ata, Habiba T. Jalal, Joumana E. Zeidan, Reem T. Rashed & Riham A. El-Shiekh Springer Nature Inflammopharmacology Published: 27 November 2025 The gut-brain axis plays a vital role in migraine pathophysiology. Studies highlight reciprocal interactions between the central nervous system and the gastrointestinal tract. Previous research suggests that factors such as gut microbiota profiles, inflammatory mediators, neuropeptides, serotonin pathways, stress hormones, and nutritional substances influence this interaction. The pathophysiology of migraine has been linked to changes in the gut-brain axis, which affects migraine severity and frequency. Additionally, dietary approaches, including the ketogenic diet, vitamin D supplementation, omega-3 intake, probiotics, and weight loss plans, have shown promising effects in reducing migraine symptoms by positively impacting the gut microbiota and the gut-brain axis. Understanding these connections could lead to novel therapeutic strategies for effectively managing migraines. It is worth noting that research highlights several innovative treatments for migraine, such as Zelirex and Cevimide, implantable devices like Cefaly and Revilion, and new effective routes of administration for Sumatriptan. Finally, patients’ perspectives and concerns were thoroughly discussed, with a focus on future directions in the migraine-gut axis research.

Notebook LM Audio Summary Podcast Generation (AI generated). Cluster_Headaches_Solved_Dual-Target_Neuromodulation.m4a

Update of Seven Cases of Refractory Cluster Headache Treated with Combined Occipital Nerve and Sphenopalatine Ganglion Stimulation with Good Mean Outcome in a Long Term Follow Up Juan Carlos Mario Andreani, Fabián Piedimonte, Osvaldo Bruera, Marco Lisicki, Diego Bashkansky Published Vol. 19 in NeuroTarget 2025 Link: https://doi.org/10.47924/neurotarget2025549 Abstract: Cluster headache (CH) is an extremely debilitating and often difficult-to-treat headache disorder characterized by recurrent attacks of excruciating pain associated with cranial autonomic symptoms. Several invasive neuromodulation procedures have been evaluated in the past, but the combination of these procedures to maximize response has not been studied in groups of patients. This presentation aims to describe an update on the evolution of cases based on a recent publication of ours. This single-center, retrospective, observational study included seven patients (3F/4M) suffering from CCH, according to the diagnostic criteria of the current International Classification of Headache Disorders, and considered refractory based on the Consensus Statement of the European Headache Federation. Between February 2010 and March 2021, these patients underwent implantation of electrodes for SPG and greater occipital nerve (GON) stimulation ipsilateral to the side of the pain. The mean follow-up time was 6.38 years ± 3.6. Six out of the seven patients (86%) experienced good-to-excellent initial pain relief, defined as ≥50% reduction in VAS scores compared to baseline, with marked improvement in attack severity and functional impact. Almost complete remission of symptoms was achieved in most cases. Multiple techniques have been proposed to control CH symptoms. Here we report, for the first time, that combined invasive SPG and GON neurostimulation significantly and enduringly improves CCH symptoms in a series of refractory patients. The relatively low number and severity of complications suggest a favorable risk-benefit profile. Synergistic invasive SPG-GON stimulation appears to be a relatively safe and promising alternative for effective and long-lasting control of CCH.

Notebook LM Audio Summary Podcast Generation (AI generated). Cluster_Headache_Restlessness_Explained_By_Brain_Scan.m4a

Uncovering the neurological substrates underlying restlessness in cluster headache - A functional MRI study Shu-Ting Chen, Chia-Chun Chiang, Yung-Lin Chen, Shin-Yi Tseng, Mei-Chun Chen, Chi-ieong David Lau & Jr-Wei Wu Published in The Journal of Headache and Pain on November 25, 2025 Link: https://doi.org/10.1186/s10194-025-02209-7 Abstract: Restlessness or agitation is one of the core symptoms of cluster headache (CH). However, the neurological substrate underlying this phenomenon has not been thoroughly analyzed. Whether they are attributed to the core aggression circuit or other CH-related structures remains unclear. The aim of this study is to use functional neuroimaging to elucidate the underlying mechanism of restlessness or agitation in CH. We prospectively recruited consecutive patients with CH from the Headache Clinic of Taipei Veterans General Hospital between Jan 2022 and July 2025. Patients who consistently reported either the presence or absence of restlessness during CH attacks were enrolled and categorized into two groups: restlessness and non-restlessness. All enrolled patients underwent a functional magnetic resonance imaging (fMRI) scan. In the restlessness group, patients were required to exhibit restlessness during the fMRI scan, whereas those in the non-restlessness group showed no restlessness at the time of scanning. In this study, 32 regions of interest (ROIs) relevant to CH pathophysiology and the core aggression circuit were selected. To identify restlessness-related networks, ROI-to-ROI functional connectivity was compared between the restlessness and non-restlessness groups. To investigate downstream network for restlessness, ROI-to-voxel analyses were conducted using a general linear model, with ROIs showing significant differences in the initial ROI-to-ROI analysis as seeds. Multiple comparisons were corrected using both the false discovery rate (FDR) and family-wise error (FWE) methods. A total of 24 patients with CH were recruited and categorized into two groups: restlessness (N = 14) and non-restlessness (N = 10). The ROI-to-ROI functional connectivity analysis of CH patients with restlessness revealed a significant connection between the non-pain side locus coeruleus (LC) and the pain-side substantia nigra pars compacta (SNpc), which survived FDR correction (p-FDR = 0.016). Seed-based general linear model analysis further revealed decreased connectivity between the pain-side SNpc and pain-side superior frontal gyrus, which survived FWE correction (p = 0.037). However, there were no significant cortical connectivity from the LC survived the FDR correction. Our fMRI findings suggest that the neurological substrates of restlessness in CH involve the LC and SNpc rather than the core aggression network. Weakened connectivity from the SNpc to the superior frontal cortex may represent the downstream pathway contributing to restlessness in CH.

Thanks for the reply. I appreciate the advice. Actually any advice is appreciated ! Anyone else out there have any suggestions? I'm trying to get more information on dosing. How much to start?? I'm thinking .2 grams. Have purchased a good scale and am looking at BMK and Ghost/Blue Meanies to start. Any comments ?

Yes, they work. The anti-inflammatory impact is significant. I also do not have a cluster headache. I have had a constant headache, 24/7/3365, always, even while sleeping, since 7:34 am March 16th 2009. Botox takes 2-3 points off of the pain. Qulipta takes 2-3 points off of the pain. Shrooms, get rid of 75% of the pain for me. It is not fun. S&S is critical. Knowing the strain and dose is critical. Knowing what you are doing before you do it is critical. Where to get the information, not sure, the government does not allow proper research. Not in grams, but on potency. Some have 1,000 units, some have 19,000 units, per gram. Watch every video you can.

Notebook LLM Audio Summary Podcast Generation (AI generated). Leaky_Gut_Causes_Chronic_Migraines_and_Pain.m4a

In lieu of a recent article I wrote exploring the literature that may support dysbiosis in cluster headache (check general board), a number of parallels were cautiously drawn from emerging migraine literature, which I thought worth sharing in one place here on the migraine board. These recent studies explore the emerging role of dysbiosis as a causative factor in migraine pathogenesis, exploring potential links via the gut-brain axis, microbial imbalance and therapeutic interventions like probiotics or faecal microbiota transplantation (FMT). Whilst I don’t suffer from migraine myself, having read this body of work, if I did I think it would be a fair and reasonable question to be asking: “Do I have dysbiosis, and if so, what can I do about it?” None of the papers below explore the role of optimised nutrition in detail, nor do they touch on two of my favourite patient-led protocols that are known to reshape the gastrointestinal environment and microbiome - high-dose vitamin D and psilocybin - but the door remains open for those avenues to be investigated (and hopefully discussed here). Happy reading – welcome your comment and you’ll find a NotebookLM audio summary generation below if you’d rather listen to a podcast rather than read studies. I have offered the links to the articles and a short generated summary snippet - any of the articles are behind a paywall and you’d like me to shoot you off a copy please reach out via DM. Gut microbiota dysbiosis enhances migraine-like pain via TNFα upregulation Published January 2020 https://doi.org/10.1007/s12035-019-01721-7 Yuanyuan Tang, Sufang Liu, Hui Shu, Lora Yanagisawa, Feng Tao Key finding: Antibiotic-induced dysbiosis and germ-free status markedly worsen nitroglycerin-triggered migraine-like pain in mice through TNFα-mediated trigeminal sensitisation; probiotics reverse the effect. The association between migraine and gut microbiota: a systematic review Published April 2023 https://doi.org/10.1007/s13760-025-02779-y Alon Gorenshtein, Kamel Shihada, Liron Leibovitch, Tom Liba, Avner Goren Key finding: Consistent reduction in anti-inflammatory genera (especially Faecalibacterium) and increased Veillonella in migraineurs; overall picture of dysbiosis and reduced diversity. A causal effect of gut microbiota in the development of migraine Published July 2023 https://doi.org/10.1186/s10194-023-01609-x Qiang He, Wenjing Wang, Yang Xiong, Chuanyuan Tao, Lu Ma, Junpeng Ma, Chao You, and The International Headache Genetics Consortium Key finding: Mendelian randomisation evidence of causal links from multiple bacterial taxa (including Bifidobacteriaceae) to migraine, migraine with aura, and migraine without aura. Making migraine easier to stomach: the role of the gut–brain–immune axis in headache disorders Published 2023 https://doi.org/10.1111/ene.15934 Marissa Sgro, Jason Ray, Emma Foster, Richelle Mychasiuk Key finding: Narrative review emphasising that a diverse, healthy microbiome is required for optimal brain health and that dietary manipulation is a logical therapeutic lever. Migraine as a Disease Associated with Dysbiosis and Possible Therapy with Fecal Microbiota Transplantation Published 14 August 2023 https://doi.org/10.3390/microorganisms11082083 Ágnes Kappéter, Dávid Sipos, Adorján Varga, Szabolcs Vigvári, Bernadett Halda-Kiss, Zoltán Péterfi Key finding: Explicitly proposes fecal microbiota transplantation as a future therapeutic option for migraine on the basis of restored serotonin signalling and reduced neuroinflammation. Linking Migraine to Gut Dysbiosis and Chronic Non-Communicable Diseases Published 11 October 2023 https://doi.org/10.3390/nu15204327 Manuela Di Lauro, Cristina Guerriero, Kevin Cornali, Maria Albanese, Micaela Costacurta, Nicola Biagio Mercuri, Nicola Di Daniele, Annalisa Noce Key finding: Places gut dysbiosis at the centre of a bidirectional relationship between migraine and cardiometabolic disorders; advocates nutritional and lifestyle approaches to restore eubiosis. Lipopolysaccharide, VE-cadherin, HMGB1, and HIF-1α levels are elevated in the systemic circulation in chronic migraine patients with medication overuse headache: evidence of leaky gut and inflammation Published 2024 https://doi.org/10.1186/s10194-024-01730-5 Doga Vuralli, Merve Ceren Akgor, Hale Gok Dagidir, Ozlem Gulbahar, Meltem Yalinay, Hayrunnisa Bolay Key finding: First human evidence of raised circulating LPS and leaky-gut markers in chronic migraine + medication-overuse headache, directly implicating intestinal hyperpermeability. The Brain, the Eating Plate, and the Gut Microbiome: Partners in Migraine Pathogenesis Published 11 July 2024 https://doi.org/10.3390/nu16142222 Parisa Gazerani, Laura Papetti, Turgay Dalkara, Calli Leighann Cook, Caitlin Webster, Jinbing Bai Key finding: Strong call for personalised dietary and pre/probiotic interventions; highlights bidirectional influence between diet, microbiome, and migraine susceptibility. Oral and Gut Dysbiosis in Migraine: Oral Microbial Signatures as Biomarkers of Migraine Published 2025 https://doi.org/10.1212/NXI.0000000000200437 Soomi Cho, Yeonjae Jung, Hyun-Seok Oh, Jungyon Yum, Seungwon Song, JaeWook Jeong, Woo-Seok Ha, Kyung Min Kim, Won-Joo Kim, Min Kyung Chu Key finding: Oral dysbiosis is even more pronounced than gut dysbiosis in migraine; specific oral microbial clusters predict migraine status with high accuracy and correlate with headache frequency. Unravelling the gut–brain connection: a systematic review of migraine and the gut microbiome Published 3 April 2025 https://doi.org/10.1186/s10194-025-02039-7 Caroline W Mugo, Ella Church, Richard D Horniblow, Susan P Mollan, Hannah Botfield, Lisa J Hill, Alexandra J Sinclair, Olivia Grech Key finding: Synbiotic and combined probiotic–synbiotic regimens consistently reduce attack frequency, severity, duration, and analgesic consumption in randomised trials. Gut microbiota, probiotics, and migraine: a clinical review and meta-analysis Published 12 September 2025 https://doi.org/10.22514/jofph.2025.043 Olga Grodzka, Izabela Domitrz Key finding: Meta-analysis of RCTs confirms probiotics significantly lower migraine frequency; effect on severity approaches significance despite limited trials.