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Just an FYI that the link is bad. 404 not found error.

Hi Mike, Sorry to hear that the headbangers are back... It's always a serious bummer to read about this sort of situation. Attached is a PDF of the D3 Quick Start guide. There has been some good discussions on splitting your trex injections as most find that they get the same relief with a half dose and this method helps to reduce overuse. There are other resources on here if you are open to less conventional methods to manage your bangers (Blue ribbon at the top-New users please read here first). I hope this passes soon!! Quick Start Guide - Sept 2023.pdf

Hello, It has been a decade since I have visited y’all. I regret forgetting how support this group had giving me on the past. I’m sorry I have not been there to support others when I was pain free. There is a vitamin D cocktail that helped me very much, could you direct me to it? Recently I have been diagnosed with an autoimmune disease called CIDP and coincidentally or not my headaches have returned after being five years pain free. Up to an imitrex injection nightly for a month and high flow O2 throughout the day. Not going completely away at all. Im am going to hit the forum archives hard. So as you all know I am in panic mode and am reaching out for help and support. Thank you, Mike D

This is a new and highly relevant study for anyone with CH considering or already following the Vitamin D3 Anti-Inflammatory Regimen. In participants with baseline 25(OH)D3 levels below 20ng/mL, researchers used the same loading dose of 600,000 IU that the regimen recommends. What makes this particularly interesting is that their maintenance doses were substantially higher than the standard 10,000 IU per day typically required to sustain serum levels in the 80–100 ng/mL range. Across roughly ninety patients these higher doses were well tolerated, with no evidence of renal impairment or disturbances in calcium homeostasis. This offers compelling reassurance for CH'ers who may feel uneasy about achieving or maintaining the regimen’s target vitamin D levels. Regular monitoring remains essential, but this study reinforces that the dosing strategy is safe when managed appropriately. It also suggests that if some CH'ers fail to achieve a therapeutic response with the base regimen they may entertain elevating their 25(OH)D3 level higher in order to reach a therapeutic threshold (again with close monitoring of labs).

Notebook LLM Audio Summary Podcast Generation (AI generated). Unlocking_Remission__How_High-Dose,_Monitored_Vitamin_D3_Safely.m4a

Prolonged high dose daily oral vitamin D3 in the management of psoriasis: A retrospective chart analysis Renu Mahtani, Sudhir Singh, Pradeep MK Nair, Satya Prakash Singh & Mankul Goyal Published in IP Indian Journal of Clinical and Experimental Dermatology on 26 September 2025 Link: https://doi.org/10.18231/j.ijced.89447.1758864688 Abstract: Background: Autoimmune disorders, particularly psoriasis, are often associated with vitamin D deficiency and vitamin D resistance. Higher daily doses of vitamin D3 are considered effective in overcoming vitamin D resistance and reversing psoriasis symptoms. This study was conducted to evaluate the safety and efficacy of individualized, prolonged high‑dose daily oral vitamin D3 therapy in patients with moderate‑to‑severe psoriasis. Materials and Methods: In this study, we present data from 95 patients with moderate‑to‑severe psoriasis who underwent individualized high‑dose daily oral vitamin D3 (cholecalciferol) therapy. From this cohort, six representative cases are described in detail to illustrate the approach to personalized dosing and the monitoring process using biochemical markers such as parathyroid hormone (PTH) and ionized calcium. The efficacy of the intervention was assessed using Psoriasis Area and Severity Index (PASI) scores, while safety was evaluated through regular monitoring of serum creatinine and ionized calcium levels. Statistical analyses were conducted to examine the relationship between vitamin D3 dosage, serum 25(OH)D levels, PTH suppression, and clinical improvement. Results: Significant clinical improvement or remission was noted, without hypercalcemia or toxicity. PTH levels consistently declined in parallel with clinical response, suggesting vitamin D action. Conclusion: Monitored oral vitamin D3 therapy in higher than supplemental dose, can be a safe and effective treatment for psoriasis.

For an overall guide, you might look here: Basic non-busting information - ClusterBuster Files - ClusterBusters. At the end of that file is the same concise description of busting that appears under the button "New Users -- Please Read Here First" near the top of each page. ("Busting" -- using psychedelic substances to treat CH -- is the reason this site was created, but we cover everything you might need to know if busting doesn't appeal to you.) This is most definitely NOT how your life will be!! CH is manageable. Craigo has told you many of the ways (all discussed at the above link). Your overuse of the rizatriptan is understandable, but it is also almost certainly worsening your attacks and extending your cycle. OXYGEN is a necessity. (And rizatriptan is probably fifth or sixth among triptans in effectiveness for CH. I'm gonna say that by throwing meds at it and (as far as we can see from what you've said) not prescribing what works best, your doctor probably isn't great. A headache center is best if you can get to one (but many people here only see doctors now for filling the prescriptions they know they need, such as oxygen, and getting tests for the D3 regimen). Did you get relief at the ER? If so, what were you given there? A lot of people worry that they have become chronic. It's at least 90% likely that you have not. You are going to be okay. You might get the kind of fabulous preventive effects that Craigo and others (even people with chronic CH) have gotten, so that you are actually pain-free for long periods -- years, even -- but even if you aren't that successful, you will know how to manage your cycles and your attacks so they do not define your life.

Hey Erick. It's not strange at all - I get it, we get it - I actually travelled from New Zealand to Dallas this September just to meet other cluster headache patients. We hear you, we see you. Welcome and I am sorry that you find yourself in the midst of a particularly tough cycle. 1-2 a week would be nice, 3-7 a day is more in tune with my cycles which run annually Nov-Mar. I would say this isn't your life now and there are options available to you and you are in the right place to learn about those. There are 3 types of therapies for CH, abortive, bridging and preventative. For the abortive I hear your thoughts re triptans, they come with side effects, you can only use so many within a 24 period and they can cause rebound attacks. I would recommend investigating high flow oxygen via a non-rebreathable mask like the cluster o2 kit or looking into a DMT vape pen (there is a recent thread on this from one of our active members maybe worth checking out). Once you find you are able to abort effectively and quickly you'll hopefully find you get a bit less dread and anxiety for the next attack. Bridging therapies are used temporarily to offer relief whilst you wait for a preventative therapy to start working, sometimes a short tapered course of prednisone is enough to break a cycle or buy you 10-14 days pain free bliss and hopefully when you taper off, a preventative medication has started to work. You haven't mentioned what preventative meds have tried, you could share that info - perhaps we could offer our thoughts. I would just leave you with my experience being that I am now in the 10th season of successfully preventing my CH using the patient led treatment protocol the Vitamin D3 Anti-Inflammatory Regimen for Cluster Headache. If you immediately thought yeah, right - tell me another one then I'd encourage you to put that preconception to the side and just learn a little more to see if it resonates with you. It has been so effective for me I consider myself lucky but I am one of thousands since circa 2011 that has seen similar benefit. I also like that it is natural, safe (when followed as documented), accessible and affordable - I buy the supplements for less than $1 USD per day. www.vitamindregimen.com or I am sure you will find the protocol here on this site as well. There is the option of busting and I am sure others would be able to offer solid advice over and above the resources available on this amazing website. Importantly hang in there man, I hope pain free days are around the corner for you - this will pass. PFW, Craig.

I don’t know if I’m using this forum right, and I feel real weird being like, “hey strangers, someone please talk to me…” but … I don’t know what else to do. i used to get terrible headaches as a kid, maybe a couple times a week for awhile, but then they’d disappear for awhile and come back after a couple years. Now I’m in my 40’s and am learning that these are cluster headaches. This “cycle,” however, is BRUTAL. Instead of 1-2 a week, I’m getting 3-7 a DAY. The Dr has me on SIX different meds. The Rizatriptan works great, but I can only use it a few times a day (and supposed to only use it a couple days a week… but I’ve been using it 7 days a week). I’ve been to the ER three times this week. is this just life now (the Dr can’t tell me)? Since this cycle is so different, did I go chronic (the Dr can’t tell me)? What can I do (the Dr just keeps throwing more drugs at me)?! Sorry if this isn’t the right forum - I’m mostly just purging… but it would be great to talk to someone who knows what this is like. Erick

We had Dr. Rev. Tammy Isaac come to our conference this year. I reached out given November is Family Caregiver Month and she sent me these resources and she will create some NEW content for us next week! I'll try to remember to add them to the thread when they go live. Our Care Partners are so important! We want you to know how much we care and appreciate you - and remember...you can experience grief in this process too. We have Care Partner groups and programs! ⁠ ⁠ Below are some resources from our amazing friend Dr. Rev. Tammy Isaac. Those who were at the conference heard her speak, she has some resources I'd like to share. Please take a moment for you to read/listen to these- and know how much gratitude we have for you.⁠ ⁠ Blog Post: Carrying Love, Carrying Loss: The Caregiver’s Journey⁠ https://www.breathegriefcounselingcenter.com/post/carrying-love-carrying-loss-the-caregiver-s-journey⁠ ⁠ Permission to Breathe Podcast Episode: Caregiver Grief: Loving Through Loss Before Goodbye⁠ ⁠ Spotify: https://open.spotify.com/episode/5nqQFAs5Xre7m0HF5LJkGE?si=4iaIx_lYTiW6sU9Psrxnrw⁠ ⁠ Apple Podcast: https://podcasts.apple.com/us/podcast/caregiver-grief-loving-through-loss-before-goodbye/id1767836754?i=1000721385568

Clusterbusters is partnering with another nonprofit organization - ClusterFree. https://clusterfree.org/⁠ ⁠ They have sign on letters. One is global, then there is a list of locations - please check their site for both. They are working to:⁠ ⁠ To achieve our mission, we:⁠ ⁠ Publish open letters demanding that governments, regulatory bodies, and medical associations worldwide take action immediately.⁠ ⁠ Engage with policymakers globally to advocate for better access to treatments.⁠ ⁠ Publish research on cluster headache and support other researchers in the field.⁠ ⁠ Collaborate with entrepreneurs and philanthropists motivated to bring effective treatments to market.⁠ ⁠ Thank you ClusterFree for partnering with us and raising awareness of cluster headache on a global scale!

Do you experience Hemicrania Continua? We are starting a new group for those who experience another TAC (trigeminal autonomic cephalgia) called Hemicrania Continua. People experiencing this have 24/7 pain as well as other features that while can be similar to cluster headache. We want to support our siblings by giving them a place to meet others and also to reach out to the community with this support option. Third Thursday of the month at 1pm ET To attend, send Anna an email at anna@clusterbusters.org and she will add you to the calendar invite with the zoom link.

Care Partners Experiencing burnout? Feeling overwhelmed? Want to learn self-care tips? We want to support you in YOUR journey! Starting November 12th, Julia will be hosting a support group on the 2nd Wednesday of every month at 6pm CT/ 7pm ET Register in advance for this meeting: https://us06web.zoom.us/.../register/8AQ75ckZQn-ddzoYfreZbQ After registering, you will receive a confirmation email containing information about joining the meeting.

Craig Stewart is launching a new support group for those in New Zealand and Australia. It will meet on the 3rd Sunday of each month at: New Zealand: 6pm Australia AEDT: 4pm Australia AEST: 3pm Register: https://us06web.zoom.us/.../register/jBEVM84QRs-RP6lgNdFCmw After registering, you will receive a confirmation email containing information about joining the meeting. If you have any questions, contact Craig at Craigedstewart@gmail.com or Anna at anna@clusterbusters.org

Notebook LLM Audio Summary Podcast Generation (AI generated). The_Defender_Cell__Genetic_Proof_that_T-Cells_Protect_Against_E.m4a

CD39+ CD4+ T cells influence cluster headache risk via ADP/N-acetylneuraminate and choline metabolic pathways: evidence from Mendelian Randomization Jingshan Zeng, Ying Yi, Hu Xie & Yun Zhu Published in International Journal of Neuroscience on October 30, 2025 Link: https://doi.org/10.1080/00207454.2025.2580332 Abstract: This study employs the Mendelian randomization (MR) approach to investigate the causal relationships among immune cells, cluster headache (CH), and potential mediation by serum metabolites. Using genome-wide association study (GWAS) data, MR analyses were conducted on 731 immune cell phenotypes, 1400 serum metabolites, and CH. The inverse variance weighted (IVW) method was employed as the primary analytical approach, supplemented by MR-Egger and weighted median analyses. Stability of results was assessed using Cochran’s Q and other statistical tests. The analysis identified a negative causal relationship between CD39+ CD4+ %T cells and CH, supported by sensitivity analyses. Reverse MR analysis showed no effect of CH on CD39+ CD4+ T cells, suggesting a unidirectional role of these cells in reducing CH risk. Further mediation MR analysis indicated that CD39+ CD4+ T cells may influence CH risk through the regulation of either the adenosine 5′-diphosphate (ADP) to N-acetylneuraminate ratio or the choline phosphate to phosphoethanolamine ratio, with mediation effect ratios of 12.4% and 12.5%, respectively. CD39+ CD4+ T cells may reduce CH risk by increasing the adenosine 5′-diphosphate (ADP) to N-acetylneuraminate ratio or the choline phosphate to phosphoethanolamine ratio. These findings provide novel insights into potential targets for the prevention and treatment of CH.

In the spirit of "the Lord helps those who help themselves", citizen science and understanding the transitional turmoil society is wrestling with these days its hard to do anything "unconventional" with traditional medical support as many who hold licenses are reluctant or not open minded enough to paint outside the lines. When treating individuals who come to a medical provider there is an obligation to follow the rules, protocols and standard of care. While this behavior is most common much latitude exists when addressing uncommon or unclear issues. The problem remains there is no real strong "proof" or data to support many treatment pathways. Experience, individual response and "because that was how I was taught" often color health care delivery. Point being, when addressing difficult to treat, poorly understood problems with unsatisfactory treatments like CH I submit there is plenty of room to explore options on an individual basis while ascribing to the overriding tenant "first do no harm". This philosophy allows exploration of things like psychedelics, vitamin supplementations, diet, nerve stimulation, o2 etc.. Most of these (and other) interventions started from individual case reports, speculation, dream states, desperation, deduction and reasoning. Proof of course proves elusive as the standard of acknowledging an effective intervention requires a control group or some fancy statistical manipulations. This is important info to have to make widespread recommendations but for individual choice the bar is much lower. The point of the blabbering is to suggest gut microbiome issues, diet and physiologic state and even other peculiar interventions are worth exploring when help remains elusive. Proposing ideas, reporting outcomes and supporting each other becomes critical. The horrors of CH are only know to those who suffer them. There is no way to express the pain, destruction of life goals, isolation and despair CH brings. One way to combat this is to feel free to evaluate treatment option no matter how far fetched. And then discuss.

Thank-you for reading and for sharing your kind feedback, I appreciate it. I believe everything I have offered is factual and surmises the research findings correctly although I admit its shortcomings being there is no hard evidence right now linking dysbiosis in pathogenesis of CH. Hopefully it stimulates a further conversation or inspires someone to further investigate. I guess if I gave up my job today and went back to university, I might have a degree in immunology and microbiology in another decade and a more meaty take on the matter for you. In respect of your thoughts around a therapeutic protocol, I like your thought process and when I look at the case report by Beltran and having further read his other case reports and presentations, the diagnostic work-up usually includes the GI Map (here's a sample report) & SIFO/SIBO breath test. The treatment protocol he uses employs what he refers the Microbiome Concordance Index Score to assess microbiome dysfunction and inform a tailored treatment protocol, specifically the selection of dietary intervention and use of herbal antimicrobials alongside high dose vitamin D3. If anything, if I found myself falling from remission whilst maintaining a vitamin D3 level of 100ng/mL I would take another loading dose and add the full monty supplements as well as starting a ketogenic diet with a 24 hour fast. It's worked for me once before, I am confident it would do again, it is just a bit nerve racking taking your 25(OH)D3 up close to the 200ng/mL range. Beyond that ordering a GI map and navigating the complexities of selecting the appropriate herbals and diet based on the results is probably beyond my level of comfort, I'd seek the advice of a functional doctor. Thanks again for your reply.

...wow, that is an awesome summary @Craigo...much appreciated! ...personal experience with multiple autoimmune ailments, forum discussions, and an awakening in medicine growing over the years has advised my bias towards some connection with gut biome. one particular experience (chemo), which i'm speculating dramatically altered mine and "possibly" contributed to a significant reduction in my active CH. ...i must say, as a "grampa" clusterhead, another bias is the hypothalamus as mediator of CH....lightheartedly as much as a cluster patient can be, some called "a wonky hypothalamus". partially as an "easy" demon to point a finger at since we really had nothing better...but supported by the symptoms of CH being nearly all systems and particulars controlled by the hypothalamus. not to say the inflammation you discuss would not have an effect on the hypo...but it would seem outsized to this layman. ...i look forward to more of this wonderful reporting...

An Exploration of the Psychological Aspects of Cluster Headache Helena Whitley Published by University of East Anglia on October 30, 2025 Link: https://ueaeprints.uea.ac.uk/id/eprint/100852 Abstract: Cluster Headache (CH) is cited as one of the most painful experiences known to humankind. This thesis portfolio aimed to provide a greater insight into the psychological aspects of CH. A systematic review accumulated evidence of rates of depression and suicidality in individuals living with CH and an empirical paper explored the psychological experience of living with CH. A systematic review and meta-analysis was conducted to determine rates of depression and suicidality amongst individuals with CH compared to non-headache controls and individuals with other primary headache conditions (Migraine or Tension-Type Headache (TTH)). Secondly, 13 interviews were conducted with individuals living with CH and this data was analysed using Reflexive Thematic Analysis. Meta-analyses of 20 studies showed that compared to non-headache controls, adults with CH had much higher levels of depression and suicidality. However, there was no significant difference in depression levels between CH and Migraine individuals. Comparing individuals with CH and TTH, the initial meta-analysis found no significant difference in depression levels, but a sensitivity analysis showed TTH individuals having higher levels of depression. Considerable heterogeneity and publication bias were present. Reflective Thematic Analysis identified five themes relevant to the CH experience: “Darkness”, “Battling”, “Shifting”, “Control”, and “Despair”. There were differences within these themes based on whether a person was in the moment of pain or between attacks, whether they had the chronic or episodic form of CH, and how long they had lived with CH. This portfolio highlighted that psychological aspects of CH include increased depression and suicidality. Increased depression was also present for the other primary headache disorders. The empirical paper identified various psychological processes important in the experience of CH which could be the target of psychological treatment. Transcription.m4a

Appreciation to you for a well presented position regarding the relationship between CH. CNS and gut microbiome. Bringing together your thoughts about Vit D and psilocybin as regards gut microbiome was well done. Your position is very useful because it helps understand why everyone does not respond to certain regimens (busting, D3). By inference it also amplifies the unfortunate limited intervention we do have as basically band aids. Oxygen, while life preserving. relieves symptoms without treating anything. Same for the triptans which are a deal with the devil in my opinion. The relative effectiveness of episodic steroids in high doses also supports your treatise. It will be interesting to see if CH turns out to be largely a gut microbiome issue. This is not far fetched given a few decades ago no one thought stomach ulcers would be a microbial problem. I encourage the CB membership to try and digest what you have shared. Thee is a lot to consider and a couple of neat rabbit hole to explore. My basic attitude becomes what can be tried without harm? To that end I would appreciate your thoughts on a pathway to test ideas. 1) Get some stool testing and profiling. This is becoming more and more available (without a lot of date) from functional medicine folks in the post covid, ivermectin ins a miracle era. Probable not mandatory but dT never bad 2) identify an appropriate probiotic to employ 3) consider D3 protocol or contiue 4) start ketogenic diet as strictly as possible 5) judicious use of psychedelics for their Anti-inflammatory properties (and maybe serotonergic influences) It will be interesting to see if micro dosing turns out to be more of an antiinflammation treatment rather than CNS Well done Thank you

Now I'd like to announce: The Board of Clusterbusters has a few announcements. Welcome Gary Gibson to the board! Gary began experiencing chronic cluster headaches and hemicrania continua in 2003, marking the start of a journey that has spanned more than two decades., Gary understands firsthand the challenges faced by patients seeking effective treatment and accurate information. That search for answers and community led him to Clusterbusters. Since joining the organization, Gary has become an active contributor to its mission through the Clusterbuddies peer-to-peer support program and by facilitating a regional support group in Texas. He is also a passionate advocate for the headache community, regularly participating in Headache on the Hill to raise awareness and promote legislative action that supports headache disorder treatment, research, and care access. Outside his advocacy work, Gary holds a Bachelor’s degree in Mechanical Engineering from The University of Texas at Austin and manages an engineering team in the energy and aerospace industries. Gary’s wife is an active supporter and advocate, working alongside him to strengthen the Clusterbusters community and uplift both patients and caregivers. Beyond his professional and volunteer commitments, Gary and his wife enjoy spending time outdoors, traveling, cheering on college football, and sharing life’s adventures with their three granddaughters. Anna Williams will move from Interim Vice President to Interim President. Mary Franklin will be the Interim Vice President. Thank you for your support as we adjust through the changes of 2025. The interim positions give us time to reflect and discuss who will best fill the positions. To read about our team: https://clusterbusters.org/about/directors-and-team/

This will be a bit long, but wanted to share some messages from the board. First - We would like to share a message from Ainslie. Dear friends, It’s is with great sadness that due to ongoing health concerns, I have made the very difficult decision to resign from my position as President of the Clusterbusters Board of Directors. I have supported CB since its infancy in the early 2000’s, attended my first US conference in 2015, and was voted onto the Board in November 2019. I became Vice President in April of 2020 and President in April 2025 to date. I was honoured to organise the first U.K./European conference in my home city of Glasgow in 2023, followed by a second event in 2024. In total, 6 years as a very,very proud member of the team. I have been so fortunate to be a part of such an amazing organisation and to work with such wonderful people globally. This has brought me huge joy and wonderful life-long friendships. I wish Clusterbusters continuing success and each individual Board member all the very best in their new leadership roles. It’s quite the amazing team! There will never be enough days for me on this earth to show my gratitude to Clusterbusters. They saved my life. With love and thanks, Ainslie We have appreciated Ainslie's leadership, not only in 2025, or since 2019 when she joined the board, but for her many years of being in our community inspiring HOPE. While it is with great sadness that she steps away from her position, we fully support her taking care of health. She is an amazing soul, who has given much to our community. She has put UK/Europe on the "map" and cultivated a community, maybe rather many communities. She has helped the cluster headache community in so many ways we cannot count. Thank you Ainslie. We love you, appreciate you, and respect all you have done. With much gratitude.... Clusterbusters

Non-Invasive Vagus Nerve Stimulation in Cluster Headache: A Clinical Practice Guideline Peter J. Goadsby, Alexander Feoktistov, Magdalena Anitescu, Miles Day, Peter Staats Published in Pain Practice on October 6, 2025 Link: https://doi.org/10.1111/papr.70084 Abstract: Cluster headache (CH) is a rare but severe primary headache disorder characterized by recurrent attacks of unilateral, typically periocular pain lasting 15 min to 3 h, accompanied by ipsilateral autonomic symptoms and restlessness or agitation. Attacks may occur multiple times daily and present in clusters lasting weeks to months, interspersed with remission periods in episodic CH, or without remission in chronic CH. This review summarizes the clinical evidence supporting the use of transcutaneous cervical vagus nerve stimulation (tcVNS) for both the acute and preventive treatment of CH. Relevant clinical trials, real-world studies, and guideline recommendations are discussed. Pharmacological therapy for CH includes triptans and high-flow oxygen for acute management, and verapamil, corticosteroids, or galcanezumab for prevention. For patients with inadequate response or intolerance to these options, neuromodulation may be required. TcVNS has emerged as a noninvasive, safe, and effective alternative to invasive neuromodulation. Clinical trials have demonstrated significant reductions in attack frequency and intensity, leading to U.S. Food and Drug Administration (FDA) clearance and UK National Institute for Health and Care Excellence (NICE) approval for both acute and preventive treatment of CH. TcVNS represents a well-tolerated, noninvasive neuromodulatory option for patients with cluster headache, offering both acute and preventive benefits. This paper provides an overview of the current evidence, mechanisms of action, and practical guidelines for incorporating tcVNS into clinical management.

I haven't gotten through all of this yet @Craigo but great write up so far!