Craigo

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

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.

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

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

"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

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?

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.

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.

Two useful tools I wanted to share for anyone here who keenly follows research on cluster headaches, migraine or anything for that matter. The first is Harzing’s Publish or Perish. It is a free citation analysis program that lets you easily search scientific literature across a range of journal sources. Link: https://harzing.com/resources/publish-or-perish The second that I am really loving at the moment is Google’s NotebookLM. It allows you to upload papers, PDFs, and links, then ask structured questions and generate summaries, comparisons and notes directly from your sources. For anyone trying to understand mechanisms, track themes across papers or just stay organised while reading, it is extremely handy. Link: https://notebooklm.google Both tools make it easier for patients who like to follow the science closely to evaluate studies and stay on top of emerging research. If anyone wants a quick explanation of how to use either tool for cluster headache-related topics, I am happy to share examples. The last tool - bonus lol, I went looking for something to match CHFathers cat picture in a recent AI post - found another Google tool. An experimental tool for visual exploration: you input images for subject, scene, style and the system remixes them into new visuals - here's what I got for my new CH Forums profile pic - I am here to stay now! https://labs.google/fx/tools/whisk