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Hey everyone. Been awhile since i’ve been on here. I hope everyone is well and in good health. The last time i was on here, I made some pretty anxious and depression-ridden topics about how i thought my life was over.. boy was i wrong. I’m posting this to further support the tools and methods that have been written about on these forums.. and to possibly give hope to those that feel lost, as I once did. The last 4 years have been some of the most eye-opening years of my life. I’ve made drastic health conscious decisions that aided in my relatively pain-free years. I’ve tried “busting” and diet changes. Both with great success. I listened to my body and found that a combination of Vitamin D3, magnesium glycinate and omega 3 supplements help keep my headaches at low pain levels or at bay. An (almost) gluten free, no msg or additive, low histamine, anti-inflammatory diet helps maintain that low inflammation in my body. Sleeping with my head slightly elevated and neck supported also helps me keep the blood pressure from building. I also found that getting sick with a cold/flu will immediately bring a cycle on. I assume because of the sudden onset of inflammation in the body. Especially in the face/sinuses. Taking valuable information given by Pete Batcheller, (don’t know his @ at the moment, sorry!) the cycles have been very minimal in times where they should have been grave and unforgiving. I’ve learned to accept the fact that I may have clusters for the rest of my life. I’m 24 years old, and for the first time in the 16 years i’ve had clusters, I’m finally OK with it. Where there’s a will, there’s a way. But it’s important to keep in mind that pain free responses will not happen over night. Not every piece of information helped me. Some worked, some didn’t. Having a strong support system of people helped immensely. I can partially attribute my positive attitude to one of the “busting” methods that we know about. These headaches made me appreciate the little things in life, which in turn, makes life much more beautiful. Music sounds heavenly, sights are awe inspiring, love for those around me increase. I can live my life knowing I have the tools and resources to stop a cycle, should it come back. I also learned that hardships and trying times await each and every one of us, but will never make life not worth living to the absolute best of our abilities. The human spirit is truly indomitable. I extend my love and thoughts to everyone here! I’ll be sure to keep everyone updated as I grow older

Hi everyone, I’m new here and just wanted to say how grateful I am to have found this forum. Like so many of you, I’ve been navigating the challenges of cluster headaches and all the confusion, frustration, and pain that comes with them. I’ve tried a few things, some that helped a little, some that didn’t—but I know I have a lot to learn. More than anything, I’m here to connect with others who get it. Sometimes it’s just good to know you’re not alone in this fight. Looking forward to reading through your stories, learning from your experiences, and hopefully finding some new ideas or inspiration along the way. Wishing relief and strength to everyone out there.

Hi everyone, just wanted to say hello. I've been reading this forum for a long time, as has my sister, and figured I'd pop in. CH has unfortunately been a staple in my family. My mother had them, my two older sisters, and myself, I just turned 40. One sister has gotten past the CH after her 2nd child, and my other sister had success with Botox. These things have flat out ruined life for me up to this point. Between dr hopping and multiple scans and medical bills, it has been tough. Nasal sprays and injections were the only way out for years. Oxygen helped a little. I've seen every neurologist around me and never had much success. A few years ago, I started using prednisone to get breaks when I was at my breaking point. But that stuff rips you apart after a while. I've lost friends, hopeful relationships, and countless years of my life because of these things. I was also diagnosed with trigeminal neuralgia which just added more confusion. I've always poked into this page for a little bit of hope when I thought I couldn't take it anymore, and it always helped me out seeing success stories. I'm now dating someone who understands what we go through and has been an absolute rock for me. I'm fortunate. Last week the dr prescribed verapamil at 240MG day, which I tried years ago, and it didn't work, and finally, I got some relief. I didn't expect it to work, but it worked immediately which I thought was odd. But I'll take it.. I've looked over this page for years, tried every medicine there is, and was really losing hope, but I just wanted to say thank you. There are a lot of people out there who read but don't chime in but benefit greatly from the topics discussed here. Sometimes I think just reading about other people in the same boat as you can be tremendously helpful. but currently I'm on day 4 without a headache, which is INCREDIBLE for me. I feel like this page is full of unsung heroes. Thank you so much everyone.

Got to meet so many folks, several from the board that I've interacted with for years! The big take away for me? At the 2010 conference in Portland we had one neurologist in attendance....our own bostonheadachedoc....this year we had several including one of our longtime members son who became a neurologist as a result of his Dad's clusters!!

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.

It was again an awesome time and great to se it growing over the few short years I have attended. Many more Doctors Authors and Vendors. Most of all a bunch of fun happy clusterheads from literally all over the world. Hope you all can make it next year.. Bring a friend and leave with 100 new ones.

The Horton conference 2025 organized by the Finnish Horton Association brings together professionals in medicine and pain management and - most importantly - peer support. As a welcome continuation of last year's event, the association is organizing the Horton Conference, this time on September 12–14, 2025 at Hotel Sorsanpesä in Seinäjoki. Due to the wishes of the participants, we are now expanding the event to a full weekend. The event's own website is at https://tapahtuma.hortonyhdistys.fi and tickets can be bought via the site. Our event brings together people with Horton's neuralgia, their loved ones and experts in the field to share information, experiences and peer support. The goal of the weekend is to provide participants with up-to-date information, practical tips for everyday life, and strength and hope through community. The event offers a unique opportunity to directly meet patients and their loved ones and network with other experts. People with Horton's neuralgia have to fight against the most severe pain a person can experience. The more severe the form of the disease, the greater the impact it has on all aspects of life. Pain manifests itself in attacks and these attacks are repeated, this brings fear as one component and leads to traumatization before long. Those who have been ill for a long time may be suicidal and, for example, post-traumatic stress disorder is fairly common among them. Getting control of the disease and the feeling of control experienced by the person are usually some kind of turning point for the better. This is not always achieved, because a proper, effective and safe treatment has not yet been developed for a fairly rare disease. The event can also be found on Facebook. Come join us and become empowered!

Scientists Flip Two Atoms in LSD – And Unlock a Game-Changing Mental Health Treatment praying that this doesn't share the same fate like BOL-148 did, which has super promising results for ch but is not being really pushed forward.

Just checking in. - 5 years cluster free after being chronic 8-10 daily and seconds away from ending it all. This site saved my life and I'm grateful. - took 17 tries of MM dosing every 5 days to finally get relief. ( learned about dosing here) -low histamine diet . I literally don't eat any foods with high histamines. Stopped eating meat as well. -stopped drinking alcohol (major trigger) - lost a lot of weight Initially but I have found foods I can eat to maintain a healthy diet -still maintenance dose at least 1-2 times a month. -if my d3 gets low or I don't maintenance dose I feel signs of pain. (Sickness, allergy season) - I realize food is a major trigger so I'm very cautious and eat very limited items which can be very very difficult at times but I'll rather eat blackberries for example then have a cluster any day. other triggers include - smoke of any kind (this sucks because everyone smokes and this includes hookah smoke) - extreme heat overall, the d3 regimen, avoiding histamines, dosing consistently and avoiding triggers have helped me be cluster free. Ironically, MM helped me with bipolar disorder. I stopped taking all of my bipolar meds. They're truly magic. Am I cured, ABSOLUTELY NOT but am I able to live a normal pain free life yes. At times I am very isolated from the world as I fear being triggered which sometimes is difficult but the fact I can be father to my kids is more important . Clusters have taught me to appreciate everything. Truly living between the headaches. I don't take a day for granted and wanted to send hope to anyone who may need it. -

Going on my 10th year as a Clusterhead this 2025. Always been a lurker in the shadows (no pun intended) Figured I'd actually join a forum and involve myself more. Just wanted to say hi, and thank everyone over the years for sharing their experiences and advice. I have learned more from the community than my own doctors and medical professionals. I know how alone and isolating this condition can feel and decided I should network more, So hey /wave

Not sure what a "Normal" life is anymore. My new normal is to deal with things one day at a time and adjust. I know I am going to get beat down with a massive cluster at any time of any day so I am always ready to fight back with whatever I can. I keep oxygen in the car at all times, I have it in my office at work keep a triptan injection near by as much as I can and a 5hr energy drink in my pocket. I can no longer drink alcohol so my new norm in a social aspect is water and coffee. I am not shy or hiding my clusters so when someone who does not know what I deal with and comments about not drinking or avoiding some sort of smell I tell them how it is. I can no longer burn a candle, my wife can no longer ware perfumes and depending on how my clusters are on any given day I need to avoid other scented things like cooking dinner. This is my normal life, not great but it is what I have so I embrace it and know things could always be worse. The new normal and I still love it.

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

About to start registration and presidents reception!! Supposed to be around 80 first time attendees!!

....OXYGEN, an opti-mask nonrebreather mask or direct tube, (other sourced demand valves the Cadillac worth investigating) from clusterheadaches.com, a regulator of 15-25 lpm (Amazon), energy drink or strong caffeine drink (5-hr energy my fav, no sugar, more caffeine/taurine than most), hit that O2 the first sign of a hit, try various breathing techniques like hyperventilation, breathe and hold, slow breathing....or a combination.... ...and please do listen to Shaun...he knows whereof he speaks....suma and other triptans should only be used as abort of last resort. the near instant relief is so enticing it can lead down a rabbit hole of hit/abort/rebound....rinse, repeat and ride the agony train... best jon

I'd say go and get some Professional Help my friend,

I'm just gonna move to a planet with no sun!!!!!!!

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.

I’d like to offer a contemporary perspective on recent patient reports from the cluster headache (CH) community alongside my own experience regarding the treatment of CH with nutritional interventions. This draws on a range of emerging research to explore how modulation of the gut microbiota more so than any one diet may present as a novel future therapeutic target in CH. As best I can as a CH patient, I will attempt to integrate the converging lines of evidence that support this hypothesis including a case report, drawn from the grey literature, illustrating the clinical application of such a targeted microbiome-based approach and conclude with some final thoughts on what really is a fascinating subject. More bacteria than we are human... The human genome encodes for between 20,000 and 25,000 genes. In remarkable comparison our collective microbial genome, comprised of trillions of microbes that inhabit our bodies, contains an estimated 3,000,000 to 4,000,000 million genes. The gut microbiota is a vast community of bacteria, fungi, viruses and archaea that inhabit the gastrointestinal tract, with the highest density of microbes anywhere in the body found in the colon. The diversity of this community is influenced by a number of factors including diet, environment, motility, autonomic tone, antibiotic exposure, previous infection, vitamin D3 and psychedelics (more on the vitamin D3 and psychedelics later). Their primary energy source is dietary fibre and other non-digestible carbohydrates of which they ferment into short-chain fatty acids (SCFA’s) such as acetate, propionate and butyrate. They also synthesize vitamins such as vitamin K and several B-group vitamins, amino acid derivatives like indole and GABA and secondary bile acids that in turn regulate metabolism and immune function. Together these microbes and their metabolites play an existential role in maintaining gut integrity, modulating inflammation and supporting our overall health. Balance is the key to life... that sentiment resonates with me... When this community of microbes is balanced, or in eubiosis, the relationship is mutually beneficial. We nourish the microbes and they nourish us. When the balance of this community is disrupted, disease may follow through a process referred to as dysbiosis. Imbalance of the microbiota may degrade the mucin layer, a protective layer of mucous that protects the epithelial lining of the gut. When the mucosal layer is degraded, disruption may occur at the level of the epithelium where the tight junctions that maintain integrity of permeable membranes are compromised, increasing the translocation of toxins from the gut into blood and lymph where they invoke an immune response. An example of this is lipopolysaccharide (LPS), a structural component of the outer membrane of gram-negative bacteria. LPS engages the toll like receptor 4 (TLR4) complex on innate immune cells, activating the transcription factor nuclear factor kappa-light-chain-enhancer of activated B cells (NF-κB), which translocates to the nucleus and upregulates the expression of pro-inflammatory cytokines such as interleukin-1β (IL-1β) and tumor necrosis factor-alpha (TNF-α). This cascade contributes to a process commonly referred to as “leaky gut” syndrome. Emerging Migraine Research... Whilst CH and migraine are clinically distinct disorders they do share several overlapping mechanisms including activation of the trigeminovascular system and neurogenic inflammation, as well as responsiveness to medications such as triptans and anti-CGRP monoclonal antibodies such as Emgality. Both conditions also exhibit cyclical patterns and hypersensitivity within pain processing networks. Given the larger body of research on migraine, it is useful to cautiously draw insights from migraine studies given they may reveal potential pathophysiological processes and therapeutic targets relevant to CH. In my view recent literature seems to have shifted the understanding of migraine from a neurovascular disorder toward a systemic inflammatory condition modulated by the gut-brain-immune axis. Multiple independent studies now converge on the idea that gut dysbiosis and intestinal permeability are central to migraine pathophysiology. A study by He et al. (2023) confirmed a causal relationship between gut microbial composition and migraine risk, identifying protective taxa such as Bifidobacteriales and pathogenic associations with Anaerotruncus and Clostridium genera, providing what I believe was the first robust evidence that microbiota composition can directly influence migraine susceptibility. In a 2024 study, Vuralli et al. found elevated serum LPS, VE-cadherin, HMGB1 and IL-6 in chronic migraine patients with medication overuse, supporting a “leaky-gut” inflammatory phenotype linked to trigeminal sensitization. Recent reviews and meta-analyses converge on much the same theme; migraineurs show lower microbial diversity, depletion of SCFA producing species such as Faecalibacterium and Roseburia and a relative overgrowth of pro-inflammatory species. Emerging clinical research supports therapeutic modulation of the microbiota. Grodzka and Domitrz (2025) conducted a meta-analysis that showed probiotic supplementation reduced migraine frequency with mixed effects on severity whilst Kappéter et al. (2023) proposed fecal microbiota transplantation (FMT) as a means of microbial restoration and normalizing the inflammatory mediators implicated in migraine chronification. What does the CH literature say? Comparable findings in CH are absent however new evidence does show an emerging persistent inflammatory signature. In peripheral blood, Lund et al. (2025) found distinct cytokine profiles across all CH types with oncostatin M (OSM), an IL-6 family cytokine, elevated in cCH, eCH in-cycle and eCH in remission groups. In cerebrospinal fluid, Ran et al. (2024) demonstrated higher chemokine concentrations with a serum-to-CSF gradient, concentrating inflammation within the central nervous system (CNS) and present both during active cycle and remission periods. More recently, PACAP-38 has also been found to be elevated in CH compared with controls, further supporting the presence of sustained neuroimmune activation involving vasoactive peptides even during remission periods. And whilst an underlying inflammatory signature has now been identified, the upstream driver of these elevated markers remains unlinked to dysbiosis. Taken together however these new findings point to CH as a condition underpinned by ongoing inflammation within the CNS rather than a series of isolated pain events attributed to dysfunction of the hypothalamus. So, what was this about a diet? Sign me up! What has recently been referenced by myself and others in the CH community is a 2018 case-control study by Di Lorenzo et al. that examined the effects of a ketogenic diet in a small cohort of 18 chronic CH patients refractory to standard preventive treatments. The authors reported that 15 participants responded favorably, with 11 achieving sustained pain-free remission and 12 choosing to remain on the intervention even after the study concluded. Although the mechanism of action was not explored, it is my view that the therapeutic benefit of the ketogenic diet likely extends beyond the metabolic effects of ketone production to include modulation of the gut microbiota and its associated inflammatory milieu. To my knowledge, this remains the only dietary intervention in CH and while the sample size was small the findings were nonetheless remarkable. Here warrior – I recommend giving this a try... Consider this a brief pause, a half-time reflection, before moving into the following sections. Few examples illustrate the power of patient-led initiatives better than what the CH community has been able to achieve. Out of necessity and sheer persistence, patients have effectively conducted some of the most successful citizen science projects in existence. From the early work exploring psychedelic therapy to the development of the vitamin D3 anti-inflammatory regimen, each step has been driven by individuals determined to find solutions where few existed. These remarkable efforts have produced measurable results and practical treatment tools that continue to change the lives of CH patients, indeed not all heroes wear capes. Where vitamin D3 & psilocybin converge... What I find particularly intriguing is that both of these therapies, psychedelic compounds and the Vitamin D regimen, according to emerging research, may exert part of their therapeutic effect through interactions with the gut microbiota. At the same time, their variable efficacy from one CH patient to another may be influenced by the baseline state and diversity of that patient’s microbiome. This bidirectional relationship, in which treatment both shapes and is shaped by its interaction with the microbiota, may help explain why some experience complete remission while others achieve only partial or temporary relief, or require higher or repeated doses. In the following sections, I will examine the literature that highlights the potential points of convergence between Vitamin D and psilocybin, focusing on microbiome mediated interactions. Oh vitamin D3, you have been kind to me... For almost a decade now, the Vitamin D3 anti-inflammatory regimen has kept me mostly pain-free from CH. Beyond its role in calcium homeostasis Vitamin D3 plays a key role in maintaining gastrointestinal homeostasis. The active form, 1,25-dihydroxyvitamin D3, binds to the Vitamin D receptor (VDR), which is expressed throughout the intestinal epithelium and immune cells. Through this signaling pathway Vitamin D3 influences epithelial integrity, microbial diversity and modulates the immune response (Vemulapalli et al., 2025). In refining the original regimen, Pete Batcheller included a B-complex, taking inspiration from Gominak’s work linking Vitamin D restoration to improved sleep and gut function through the microbiota’s production of B vitamins (Gominak, 2016). Gominak proposes that both Vitamin D and the microbiota exist in a symbiotic relationship, where Vitamin D supports the host environment necessary for microbial balance while a healthy microbiota contributes to the production of essential cofactors necessary for neuronal and immune health. Charoennngam et al. (2020) demonstrated that Vitamin D3 supplementation shifts the microbiota toward a less inflammatory profile, increasing beneficial commensal species such as Bacteroides while reducing pathogenic species like Porphyromonas. In regards to maintenance of the epithelial membranes, Vitamin D3 upregulates tight-junction proteins such as claudins and occludins while lowering zonulin expression, a key marker for intestinal permeability. By strengthening tight junctions Vitamin D3 may limit translocation of bacterial endotoxins such as LPS into systemic circulation (Fedele et al., 2018; Stio et al., 2016). In addition to maintaining gut barrier integrity, Vitamin D3 modulates the immune response by inhibiting NF-κB activation and reducing the production of pro-inflammatory cytokines while supporting T regulatory cell function and the production of antimicrobial peptides such as cathelicidins and beta defensins (Vemulapalli et al., 2025). Taken together these findings place Vitamin D3 as a key mediator in gut-immune homeostasis, acting at the bleeding edge between the microbial landscape and host defense. Importantly, as demonstrated by Holick and colleagues in Scientific Reports (2019), the genomic actions of Vitamin D3 are dose and blood-level responsive with higher 25-hydroxy vitamin D levels resulting in broader transcriptional changes across hundreds of genes involved in immune regulation. The fact that Pete Batcheller’s regimen has been assembled into a simple and accessible protocol with consistently impressive response rates is in itself a remarkable achievement given the devastating nature of CH. Whilst Vitamin D3 almost certainly acts on receptors within the trigeminal ganglion and hypothalamus, these recent findings suggest its actions in the periphery, particularly within the gut, may play an important role in the therapeutic efficacy of the anti-inflammatory regimen. What can mushrooms possibly have to do with any of this? Intriguing new research suggests that the therapeutic effects of psychedelics, particularly psilocybin, may in part be mediated through interactions with the gut microbiota. While its best described actions involve modulation via the serotonergic receptor, new findings reveal that psilocybin also exerts systemic effects on inflammation, immune signaling, intestinal barrier integrity as well as shaping the microbial landscape itself. Wang et al. (2025) provide an elegant synthesis of this evolving concept in a recent ACS Chemical Neuroscience viewpoint, suggesting that the therapeutic effects of psychedelics including psilocybin extend beyond cortical serotonergic circuits to modulate the gut-brain axis via interactions with the microbiome. Building on emerging evidence they position these compounds as both neuroactive and immunomodulatory agents, potentially influencing inflammation along the microbiota-gut-brain pathway via NF-κB mediated cytokine modulation as shown in complementary models like Zanikov et al., 2024. Zanikov et al. (2024) were able to show in a mouse model of colitis that psilocybin reduced gut driven neuroinflammation and lowered the expression of inflammatory cytokines IL-1β, IL-6 and COX-2 in brain parenchyma. These findings link intestinal inflammation directly to a central inflammatory response and confirm that psilocybin’s anti-inflammatory effects occur along the gut-brain axis rather than within the brain alone. Complementary in vitro work in human macrophages shows dose dependent suppression of LPS induced cytokines via modulation of NF-κB signaling, highlighting its broad immunoregulatory potential. Kelly et al. (2023) introduced the term “psilocybiome” as a framework to describe the bidirectional relationship between psychedelics and the microbiota-gut-brain axis, they propose that microbial diversity and metabolism influence every phase of psychedelic therapy from preparation and acute experience to integration. Caspani et al. (2024) build on this by exploring psychedelics potential antimicrobial effects and how they may reshape gut ecology, suggesting that microbial composition modulates psychedelic pharmacokinetics while remarkably, psychedelics, in turn, remodel the microbiota. This research suggests that psilocybin’s therapeutic benefit may indeed depend on the baseline composition and inflammatory state of the gut microbiome. This perspective offers a fresh view for the variability in dose response observed within the CH community’s collective busting experiences. It appears reasonable to suspect that interventions which restore microbial balance and support gut integrity may enhance the therapeutic window for psychedelic therapy. Although the degree to which these microbial mediated mechanisms contribute to the therapeutic benefit we see in busting for CH remains speculative, these new findings make clear that psilocybin’s actions reach beyond the mind, extending into the intricate microbial terrain in a complex dance that is beginning to be revealed. So what about that case report? Recent clinical evidence provides an example of how restoring microbial homeostasis may be achieved through an integrative approach. A 2023 case report by Beltran and Guimarães described the successful treatment of a patient with psoriasis vulgaris refractory to conventional therapies using a combined anti-inflammatory diet, high-dose vitamin D3 therapy and targeted herbal antimicrobials. The case report used a diagnostic workup that included the Gastrointestinal Microbial Assay Plus (GI-MAP), a DNA-based stool test that identifies bacterial, fungal and parasitic taxa as well as markers of gut inflammation and intestinal permeability by Quantitative PCR (qPCR). This diagnostic framework provided a precision-based view of the patient’s baseline microbial state and guided subsequent therapeutic choices. Such testing reveals that, just as no two microbiomes are identical, one size may not fit all in nutritional or supplement interventions. Importantly, dysbiosis patterns and their immunological signatures vary between individuals which necessitates personalized modulation of the microbiota rather than blanket probiotic or dietary advice. In the specific case testing revealed small intestinal fungal overgrowth (SIFO) driven by Candida albicans. These results informed a selection of herbal antimicrobials, notably oregano oil for its antifungal and biofilm-disruptive properties. Oregano oil’s mechanisms include membrane disruption and inhibition of fungal enzyme activity which reduce microbial burden and help restore mucosal homeostasis. To complement this, Curcumin longa (turmeric) was used for its capacity to inhibit NF-κB-mediated inflammation and upregulate VDR expression in epithelial and immune cells. Following five months of intervention immunofluorescence analysis of VDR expression in skin biopsies revealed upregulation of receptor density compared with baseline, correlating in full clinical remission. This finding parallels the discussion advanced in Beltran’s companion paper, Vitamin D Receptor Renewal Through Anti-Inflammatory Diet, which identifies the suppression of VDR by LPS, mycotoxins and inflammatory cytokines as key drivers of vitamin D resistance in chronic inflammatory and autoimmune diseases. By resolving dysbiosis and improving epithelial integrity through diet, the intervention removed the upstream inflammatory blockade to VDR transcription and restored immune tolerance. Where and how to even conclude this...? Cluster headache, long regarded as the most devastating disorder, may find part of its explanation not in the brain alone but in the microbial world that indeed sustains it. As our understanding of the gut-brain-immune axis deepens, the concept that dysbiosis and intestinal permeability may act as upstream drivers of neuroinflammation becomes increasingly difficult to ignore. While the literature in CH remains in its infancy, speculative bridges are clearly already being built with patents having been filed for microbial modulating technologies aimed at treating headache disorders, such as US9987224B2, which describes methods for altering gut microbiota composition to influence neurological outcomes including migraine and CH. Such developments are another signal of the growing recognition that modulating our microbial landscape presents as an attractive therapeutic target for disorders once considered purely neurogenic in origin. All being said, it's early days – what I think we have is an interesting hypothesis more so than settled science for CH specifically. The ketogenic results are impressive but need larger, controlled trials; vitamin D3 works for many but the anti-inflammatory regimen remains without clinical validation in CH and psilocybin's ties to the microbiome are certainly intriguing but mostly preclinical. All three treatment options are available for patients to pursue at their own discretion. I hope I have been able to articulate my take on the current literature and of course welcome your thoughts, comments and ideas. I have tried to be as accurate as possible, please point out any shortcomings. Many questions remain covering other important topics in CH such as genetics, periodicity and the role of personality; still – I feel like it is an exciting and hopeful time and look forward to seeing what future research may show in regards CH and the microbiome. References Migraine Vuralli, D., Akgör, M.C., Gök Dağıdır, H. et al. (2024) ‘Lipopolysaccharide, VE-cadherin, HMGB1 and HIF-1α are elevated in chronic migraine with MOH: evidence of leaky gut/inflammation’, J Headache Pain. Link: https://pmc.ncbi.nlm.nih.gov/articles/PMC10875763/ He, Q., Zhang, Y. and Li, R. (2023) ‘A causal effects of gut microbiota in the development of migraine’, J Headache Pain. Link: https://thejournalofheadacheandpain.biomedcentral.com/... Grodzka, O. and Domitrz, I. (2025) ‘Gut microbiota, probiotics, and migraine: a clinical review and meta-analysis’, Journal of Oral & Facial Pain and Headache. Link (journal): https://www.jofph.com/articles/10.22514/jofph.2025.043 Kappéter, Á., Zając, A., Domitrz, I. (2023) ‘Migraine as a disease associated with dysbiosis and possible therapy with fecal microbiota transplantation’, Biomedicines. Link: https://pmc.ncbi.nlm.nih.gov/articles/PMC10458656/ Cluster Headache Lund, N.L.T., Pedersen, S.H., Ashina, M. et al. (2025) ‘Distinct alterations of inflammatory biomarkers in cluster headache: a case–control study’, Annals of Neurology. Link (journal): https://onlinelibrary.wiley.com/doi/10.1002/ana.27205 Ran, C., Yang, Y., Guo, S. et al. (2024) ‘Elevated cytokine levels in the central nervous system of patients with cluster headache’, J Headache Pain. Link: https://thejournalofheadacheandpain.biomedcentral.com/... Søborg, M.L.K., Amin, F.M., Ashina, M. et al. (2025) ‘PACAP-38 in cluster headache: a prospective, case-control study of a potential treatment target’, Eur J Neurol. Link (PubMed): https://pubmed.ncbi.nlm.nih.gov/41002104/ Ketogenic Diet Di Lorenzo, C., Coppola, G., Sirianni, G. et al. (2018) ‘Efficacy of Modified Atkins Ketogenic Diet in Chronic Cluster Headache: An Open-Label, Single-Arm Clinical Trial’, Frontiers in Neurology. Link: https://www.frontiersin.org/.../10.../fneur.2018.00064/full Vitamin D3 Vemulapalli, R., Thomas, A. (2025) ‘The Role of Vitamin D in Gastrointestinal Homeostasis and Gut Inflammation.’, Int. J. Molecular Sciences Link: https://pubmed.ncbi.nlm.nih.gov/40243631/ Gominak, S.C. (2016) ‘Vitamin D deficiency changes the intestinal microbiome reducing B-vitamin production in the host: a hypothesis explaining chronic sleep disorder’, Medical Hypotheses. Link (PubMed): https://pubmed.ncbi.nlm.nih.gov/27515213/ Charoenngam, N., Shirvani, A., Holick, M.F. (2020) ‘The Effect of Various Doses of Oral Vitamin D3 Supplementation on Gut Microbiota in Healthy Adults: A Randomized, Double-blinded, Dose-response Study’, Anticancer Research. Link: https://pubmed.ncbi.nlm.nih.gov/31892611/ Stio, M. et al. (2016) ‘Vitamin D regulates the tight-junction protein expression in active ulcerative colitis’, Scand J Gastroenterol. Link (PubMed): https://pubmed.ncbi.nlm.nih.gov/27207502/ Scricciolo A, Roncoroni L, Lombardo V,Ferretti F, Doneda L,Elli L (2018) ‘Vitamin D3 Versus Gliadin: A Battle to the Last Tight Junction’, Digestive Diseases and Sciences. Link: https://pubmed.ncbi.nlm.nih.gov/29159680/ Shirvani A, Kalajian TA, Song A, Holick MF. (2019) ‘Disassociation of vitamin D’s calcemic and non-calcemic genomic activity & individual responsiveness: RCT’, Scientific Reports. Link: https://www.nature.com/articles/s41598-019-53864-1 Psychedelics Wang, X., Li, H. and Zhou, Z. (2025) ‘Psychedelics and the Gut Microbiome: Unraveling the Interplay and Therapeutic Implication’ (Viewpoint), ACS Chemical Neuroscience. Link (journal page): https://pubs.acs.org/doi/abs/10.1021/acschemneuro.5c00418 Zanikov, T., Gerasymchuk, M. and Robinson, G.I. (2024) ‘Psilocybin and eugenol prevent DSS-induced neuroinflammation in mice’, Biocatalysis and Agricultural Biotechnology. Link: https://www.sciencedirect.com/.../pii/S1878818124000161 Caspani et al. (2024) ‘Mind over matter: the microbial mindscapes of psychedelics and the gut-brain axis’, Progress in Neuro-Psychopharmacology & Biological Psychiatry. Link: https://www.sciencedirect.com/.../pii/S1043661824002834 Kelly, J.R., and Clarke, G. (2023) ‘Seeking the Psilocybiome: Psychedelics meet the microbiota-gut-brain axis’, International Journal of Psychopharmacology Link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9791138/ Case Report & Other Beltran, E.P. and Guimarães, G. (2023) ‘High-dose vitamin D3, anti-inflammatory diet and targeted antimicrobials in psoriasis vulgaris: clinical case with VDR immunofluorescence’, Zenodo case report (grey literature). Link: https://zenodo.org/record/7799594 Beltran, E.P. (2023) ‘Vitamin D Receptor Renewal Through Anti-inflammatory Diet’, ResearchGate/Institutional page (grey literature). Link: https://www.researchgate.net/.../369801068_Vitamin_D... US 9,987,224 B2 (2018) ‘Method and system for preventing migraine headaches, cluster headaches and dizziness.’ Link (Google Patents): https://patents.google.com/patent/US9987224B2/en

Hi all. I wanted to build on a post couple of months back that mentioned this early 2025 study in Annals of Neurology which found that Oncostatin M (OSM) was significantly elevated across all forms of cluster headache (CH), episodic in cycle (ECH), episodic in remission and chronic (CCH) when compared with controls. Distinct Alterations of Inflammatory Biomarkers in Cluster Headache Lund, N. L. T. et al. Annals of Neurology. 2025 https://pubmed.ncbi.nlm.nih.gov/39981939/ Interpretation: Findings show that the immune system is altered in all 3 states of cluster headache compared with controls. Oncostatin m was elevated, constituting a promising target for future studies. The distinct alterations between episodic and chronic cluster headache are striking and urges further research of the immune system in cluster headache to better understand its potential role in prediction of disease activity and treatment response. OSM belongs to the interleukin-6 family of cytokines which are signalling molecules released by cells to facilitate communication within the immune system and the body, acting as messengers and binding to receptors on other cells to trigger responses like inflammation, cell growth and immune cell activation. OSM is produced mostly by activated monocytes and macrophages along with T-cells once the immune system is already engaged. Triggers include microbial products such as lipopolysaccharide acting on toll-like receptors, upstream cytokines like IL-1β, TNF-α, and IL-6 as well as T-cell activation itself. In other words OSM typically appears as a second-wave signal once innate and adaptive cues are already active. After its release OSM signals through receptor complexes that require gp130 subunit, a shared hub for the IL-6 family. OSM pairs gp130 with either OSMR or LIFR receptors which activate Janus kinase enzymes (JAKs). JAKs phosphorylate STAT3 (signal transducer and activator of transcription 3) and activated STAT3 then enters the nucleus to upregulate genes for chemokines, adhesion molecules and matrix metalloproteinases. Short-term controlled activation of this pathway is essential for tissue repair but sustained persistent activation may lead to detrimental effects including weakened barriers, leukocyte recruitment and ongoing systemic inflammation. In Crohn’s disease and ulcerative colitis OSM has been shown to drive stromal activation and barrier dysfunction and high levels of OSM are a predictor of poor response to anti-TNF-α therapies. The CH study by Lund and colleagues suggests a similar kind of hard-to-quiet inflammatory program in the cranial milieu of CH patients regardless of whether or not they are in active cycle. So what may drive the persistent upstream activation that induces OSM in the first place? This wasn't discussed in the article but one source that may deserve attention is the emerging gut-immune-brain axis. As explored in my earlier post, a growing body of literature in migraine describes altered gut and oral microbiota, reduced microbial diversity, links to markers of intestinal hyperpermeability and bacterial endotoxin exposure as causative agents in migraine pathology. While migraine and CH are distinct disorders both share neuroinflammatory components, cytokine involvement and respond to many of the same treatments, is it reasonable to ask whether dysbiosis may help maintain the triggers that induce OSM expression? And if so what implication does that have on future treatment strategies for CH? And where might the Vitamin D regimen fit into this picture? The active form of Vitamin D, calcitriol, binds to the vitamin D receptor in immune and barrier cells and influences the expression of hundreds of genes. It suppresses NF-κB and MAPK signalling, promotes regulatory T-cells and IL-10 and strengthens barrier integrity by upregulating tight junction proteins in epithelial and endothelial cells. Building on Pete Batcheller’s hypothesis, maintaining sufficient blood levels of Vitamin D3 may help downregulate some of the upstream drivers of OSM expression while counteracting OSM’s disruptive effects on barrier function. Supporting this idea, work outside the headache field has shown that calcitriol can shift macrophages from an M1 pro-inflammatory state toward an M2 reparative state, reducing the production of OSM, TNF-α, and IL-6. A balanced view is important. The 2025 study identifies OSM as a persistent signal and points to specific differences between chronic and episodic CH. It did not identify a cause and it did not test interventions. The migraine-microbiome literature suggests dysbiosis as one possible upstream driver but translation to CH is yet to be explored. Other papers from this author on CH for your interest. https://pubmed.ncbi.nlm.nih.gov/?term=Lund+NLT&cauthor_id=37667192 Includes an article titled "Current treatment options for cluster headache: limitations and the unmet need for better and specific treatments-a consensus article" which concludes "We find that there is a great and unmet need to pursue novel and targeted preventive modalities to suppress the horrific pain attacks for people with cluster headache."

Hello my fellow clusterheads! It has been quite a while since I last posted on here. I don't login in regularly unless I'm in a cycle and need the additional support and information and encouragement. Thankfully, I've been relatively cluster free for about a year now! I just wanted to share a few things that's happened as of late: 1. Emgality: I'm sure it doesn't work for everyone, but Emgality has been VERY successful for me. I begin taking once a month shots as soon as I go into a cycle and I'll maintain the routine until the clusters stop. What used to be 4-5 attacks a day(at it's peak), on Emgality they've reduced to maybe 1-2 a day at peak. While still unbearably painful, the reduction in frequency is a joyous thing! 2: I began having clusters while I was still in the military(honestly didn't know they were clusters until later... Didn't even know what clusters were then). I may get some rebuttal for saying this, but this is simply my experience. I suffered a head injury in the military and the clusters began almost immediately after that. Perhaps there's a link between clusters and head injuries, or perhaps it was simply coincidence. Either way, that's how it went down. For anyone in the military that began having clusters while in, and you have it documented, I was awarded VA disability for my clusters. IT IS POSSIBLE!! The following was the verbiage used in the final decision "Service connection for cluster chronic headaches as secondary to the service-connected disability of insomnia with traumatic brain injury". The reason I let my military brothers and sisters know this is because I know treatment can be expensive (oxygen, emgality). This now being a VA disability rated concern, I can now see the VA for clusters specifically and I can get treatment through the VA. Anyways, I hope this information helps someone. Keep fighting the good fight and know that you're not alone! Reach out to me any time if you have questions.

...my favorite O2 shop tech gave me a bag of these and said "don't be afraid to change frequently, you don't want failure at the worst possible time". same dude "loaned" me (wink wink) an m60 tank reg (different than e-tank) which i still have..."return when you don't need anymore" he said. for a clusterhead that meant never. also have several spare e-tank regs bought from Amazon...Medline i think...never had a single problem. ALWAYS have a spare...it's really cheap insurance that you won't need until you REALLY do.

Dropping by to share a review article just published in The Journal of Headache and Pain which adds to the growing body of research suggesting microbial dysbiosis is implicated in migraine pathogenesis. It found migraine patients have less diverse gut microbiomes with elevated bacteroidetes, proteobacteria and firmicutes as well as reduced faecalibacterium, a butyrate producer known for its anti-inflammatory effects. This imbalance may increase gut permeability resulting in neuroinflammation impacting migraine onset and severity. Probiotics and synbiotics reduced migraine frequency, severity, and painkiller use (excluding triptans) in five randomized trials, though results varied by strain and population. Unravelling the gut-brain connection: a systematic review of migraine and the gut microbiome https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-025-02039-7 Could similar microbial mechanisms apply to CH? I suspect so. We know CH shares neuroinflammatory pathways with migraines and a couple of recent CH studies suggest there may be a systemic inflammatory component in CH as CH’ers, regardless of whether chronic or episodic (in or out of bout) were found to have elevated levels of oncostatin M and I believe it was the most recent paper that identified a distinct difference in inflammatory cytokine profiles between episodic and chronic CH sufferers. Elevated cytokine levels in the central nervous system of cluster headache patients in bout and in remission https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-024-01829-9 Distinct Alterations of Inflammatory Biomarkers in Cluster Headache: A Case Control Study https://onlinelibrary.wiley.com/doi/10.1002/ana.27205 So what evidence is there that perhaps diet may be a key therapeutic target for CH? We have the 2018 Lorenzo study to refer, where 15 of 18 chronic CH patients had a therapeutic response with 11 of those achieving clinical remission on a ketogenic diet with the author stating “we observed for the first time that a 3-month ketogenesis ameliorates clinical features of CCH.” Is it reasonable then to ask might its efficacy lie in shifting the microbiome towards a less inflammatory profile? Efficacy of Modified Atkins Ketogenic Diet in Chronic Cluster Headache: An Open-Label, Single-Arm, Clinical Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC5816269/ If you read into the literature on vitamin D3, I think there is a strong case for the vitamin D3 regimens use as a preventative therapeutic option to have in the CH toolkit given it’s unique role in modulating the immune response – notably in a dose dependent manner, as shown in one of my all-time favourite vitamin D research papers, somewhat supporting the proposed 10,000iu per day dosage as per the regimen. Disassociation of Vitamin D’s Calcemic Activity and Non-calcemic Genomic Activity and Individual Responsiveness: A Randomized Controlled Double-Blind Clinical Trial https://www.nature.com/articles/s41598-019-53864-1 The above paper was written by Professor Michael Holick, regarded as one of the pioneering vitamin D3 researchers, alongside others like Wagner and Hollis etc. He also wrote another paper showing that vitamin D3 modulates the human microbiome, increasing beneficial bacteria and decreasing pathogenic bacteria. The Effect of Various Doses of Oral Vitamin D3 Supplementation on Gut Microbiota in Healthy Adults: A Randomized, Double-blinded, Dose-response Study https://pubmed.ncbi.nlm.nih.gov/31892611/ The emerging “psilocy-biome” research is nothing short of intriguing too. Psilocybin may alter gut microbiota, increasing beneficial bacteria and reducing inflammation. It could act via the gut-brain axis with microbes metabolizing psilocybin to influence serotonin pathways or dampen neuroinflammation though this needs more study there was a fantastic paper recently published exploring this subject. Further, if the anti-inflammatory effects of psilocybin are in part derived from the interaction with the microbiome, might this contribute to variation in therapeutic response to psilocybin for CH? Mind over matter: the microbial mindscapes of psychedelics and the gut-brain axis https://www.sciencedirect.com/science/article/pii/S1043661824002834 From my humble perspective it is an exciting time to be following the research. It is interesting as a sufferer to hypothesize where all this may converge in the context of CH. It is also tempting to speculate that a patient led vitamin D3 regimen dated as early as 2011 aligns nicely with what recent research is suggesting in respect of the underlying inflammatory component now suspected in CH, particularly given my personal success with the regimen since 2015. As always, anyone considering the regimen is encouraged to doing it under the care of a physician and the regular monitoring of labs for calcium, PTH and 25(OH)D vitamin D.

...personal experience for me was 1500 mg taurine minimum to be effective (as energy drink ingredient...never tried as a supplement) best jon

We are coming from New Zealand. We intend to do the same or after the conference. It sure would be good to hear of any must see things in Texas! Look forward to meeting ya’ll.

Hello, it's nice to have a place to go were people understand. I am also fairly new. I don't post much but I do try read alot here so I feel like I'm not so alone. I have only had CH for about 5 years, chronic for the last few. I have also learned alot from this community. Everyone seems very compassionate and caring. I wish you well. Welcome !

Here's something from 2019: https://pmc.ncbi.nlm.nih.gov/articles/PMC7802413/ "As previously mentioned, it is still unclear why oxygen exhibits such good efficacy in the treatment of CH. The vasoconstrictive theory was prevalent in the early 20th century until Wolff et al. found that ergotamine constricted external carotid arteries and simultaneously relieved migrainous headaches.20 Therefore, they proposed that headache is caused by vasodilation rather than vasoconstriction. The study was published in 1938 and overturned the past theory.20 In 1961, Horton7 proposed that histamine cephalalgia was caused by the vasodilatation of extracranial vessels, and that oxygen was a vasoconstriction factor. If the vasoconstrictive effect of oxygen exists, oxygen therapy should be effective for both migraine and CH. However, the oxygen treatment is only effective for CH. In the 1980s, some studies reported a decrease of cerebrospinal flui in patients after breathing 100% oxygen as compared to breathing room air.21 Since then, animal model studies have demonstrated the protective, anti-inflammatory role of hyperoxia in microcirculatory inflammation. In 2006, Schuh-Hofer et al.11 demonstrated that hyperoxia can inhibit dural plasma protein extravasation in rats. Recent studies have suggested that CH is associated with some brain structures, including the trigeminovascular system, the cranial autonomic system, and the hypothalamus. The activation of the trigeminovascular system is thought to play an important role in the pathophysiology of CH. Goadsby and Edvinsson22 attempted to demonstrate the associations between hyperoxia and neuropeptides, and the results indicated that a significant reduction of calcitonin gene related peptide concentration in the jugular vein after oxygen treatment occurred, which suggests a possible effect of hyperoxia on trigeminal afferents. However, animal experiments have shown that oxygen does not directly act on trigeminal afferents, but appears to play a key role at the parasympathetic pathways.23 At present, studies assume that oxygen may act as a terminating factor in CH attacks. More research is needed to clarify the specific mechanisms of oxygen treatment for CH. Table 1. The history of oxygen used for cluster headache Study Year Findings Alvarez et al.15 1940 First use of oxygen for headache at a flow rate between 6 and 8 L/min. Horton16 1952 First description of oxygen used for histamine cephalalgia. Horton17 1955 Oxygen treatment in 1176 patients with histamine cephalalgia. Horton7 1961 He raised the vasoconstrictive effect of oxygen in histamine cephalalgia. Kudrow et al.18 1981 First systematic study on oxygen used for cluster headache. Fogan et al.12 1985 Crossover study found that oxygen was more effective than room air. Cohen et al.19 2009 Oxygen at 12 L/min, as well as at 7 L/min, was effective. Open in a new tab Figure 1. Open in a new tab The possible mechanism of oxygen in cluster headache. Note: TCC: Trigeminal cervical complex.

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!

Welcome to the community @danawright65, but sorry you had the need to join us! Unfortunately, when you have to deal with getting a (correct) script from a doc, and then deal with O2 suppliers, it can be difficult!!! My solution in 2007 was the procurement of a welding ox setup.....I paid $300 for a large ( 4 ft tall by 9 in diameter) cylinder, $50 for a welding ox regulator, and $25 for a clusterO2 mask from our sister site clusterheadache dot com. And I pay $23 for a refill/exchange. Now for the drawbacks.....cylinders this size are really heavy and difficult to move around, and you can't let the welding supplier know that you intend to breathe it. Same O2....the only difference is that med ox tanks go thru a vacuum process prior to refill. Dallas Denny

Thank you Jeeb! Holy cow, yes they both came with clob hoppers for feet.. .....enormous! I'm pretty sure we just brought to future whales into our home They have filled our house with all the things that have been missing (and then some)!

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.

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.

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?

...NOBODY who hasn't been "hit" understands...it's just not possible...and not something i ever held against.. ....the best HA specialist i ever had listened to my description: "pain so bad you can't believe its possible to survive, the worst ones...forgetting to breathe, i can't count the times i just wanted to die". she sucked in her breath like at least she partly understood. then said, which made me cry..."i treat this VERY aggressively, which she did!..probably too aggressively. but we figured out OXYGEN, Zomig ns as last resort, and (personally) energy drinks which she forbid because "we just don't know enough about taurine" (i did anyway, just had to).... ...but YES!...we are our own best, and frequently only advocates. what i've learned here and ch dot com have been life savers... best jon

Thank you Toni for serving the members in Finland- much love to all of you in Finland!

Hi Everyone I found an amazing source of medical Oxygen in small and extra large tanks in the Austin Texas area for Cluster Headache treatment. Company name is Texas Welding Supply, don’t be deceived by the name they supply fully medically safe O2 and are familiar with the process. Please ask for Amy Viglione, (512) 272-9353. This is website. You can use the doctor letter template found on clusterbuster website. https://www.texasweldingsupply.com

I think we all just learn to deal with it and take it as it comes. Not like we can really do much to avoid a hit, they come when they want to and hit as hard as they want to. Some have had success with busting other not so much. Sometimes it brings the pain down, makes it go away for a period of time or does nothing at all. No rhyme or reason that we know of. Just when you think you have it tamed things change and we blame it on the weather, moon or life event. I truly believe that we were all just picked to have clusters because we can deal with it like no others can. We are all the lucky ones that can honestly say they have a high threshold for pain and back it up by the countless hours we spend every week, month or year banging out head into our hands, walls floors or anything else that looks fun to take your mind off the devil inside you trying to escape. It is what it is but we are all lucky to have this site to get it out in the open with others that understand it. Just do your best and keep moving forward in hopes that someday we will have a cure for this infliction.

Got a really understanding employer, I drive a coach for a living all over Europe, but when in cycle, I work local and have days off when needed,

For our uses, I like the low cost of the Amazon units. If anyone asks, this is what I recommend. Now if I were an EMT, would I want to carry one on the truck? Probably not, but for our use I think they are fine. The low price gets someone with limited resources a 25LPM regulator for minimal outlay. I have a WT Farley too. Great, well-made unit with a 40LPM option but they cost a bit more. The only regulator I've had trouble with was a one I purchased on eBay.....the yoke bent after a few years of use and wouldn't stay sealed to the tank outlet. I robbed a couple parts off it and in the trash it went. I figure I got more than 20 bucks worth of use out of it. With any regulator, keep spare seals around. You'll need them eventually.

Care Partner Perspective Perspective matters and this year we are honored to have the daughter of someone who experiences cluster headache to give their picture of this disease. Anna's mom has cluster headache and it has shaped her educational path. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

...the first question i'd ask is: what funding? cancer research, among others, has already been cut. we have never experienced funding for CH anything besides minimal...now?

You could try some ice packs for the swelling. The ice might help to numb the pain a bit as well. The PTSD/Anxiety is a beach! I struggle with it all the time even when I'm in the clear. The one thing that I have found that helps is exercise and staying busy. I know some can't exercise without worry of an attack while others will use it as an abort. Ever since I was able to get a break from a particularly looong attack by jumping on the treadmill, it's been something that I do when I have bad shadows. Sorry I've not got much to help on this one. I hope your head clears up soon!!!

Dr. Shuhan Zhu is a neurologist with a subspeciality in headache disorders. She works at at BWH/Faulkner Headache Center where she sees patients with migraine, cluster and other disorders including CSF volume related disorders. Challenges in Diagnosis of Cluster Headache How does a doctor handle diagnosis when the path isn’t clear? Dr. Zhu found a case that confounded her for 6 months. She will go through the steps she went through to help get an accurate diagnosis for her patient. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

Counting down to the conference- I'll add speaker highlights to this thread. Patient Advocate, Craig Stewart will be flying all the way from New Zealand to join us! He has studied and become a resource for the community on not only the D3 regimen but in understanding nutritional impacts as well. The goals of his talk will be: A comprehensive guide to the Vitamin D3: Anti-Inflammatory Regimen, including what it is, how to start, loading dose protocols, safety considerations, and real-world efficacy. He will also explore the growing body of research connecting Vitamin D, nutrition, and the gut microbiome in migraine, while highlighting how this emerging field may eventually shape our understanding of cluster headache as well. His presentation is set for Friday after lunch at 1:30pm CT Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

Hello I've had the Cluster headaches since around 2016 , then l was not aware of what they were or why. It always affects the right side of my head when the attacks happen . After l was diagnose from my Neurologist , he issued Verapamil at 80 milligrams six times per day. I found taking that many pills was hard on my system , to many side effects. So l was cutting back on Verapamil to find the right mix of pills. My cycles were always later September when they started and end around the first week of February. I would only take the Verapamil when the season started then around late March, and that seem to work for a few years. I would have headaches around late evening always the same time every day. He also issued Sumatriptan 100 mgs and Rizatriptan at 10 mgs as well to stop the pain when they peaked 10/10. When the headache ended l would fall asleep fast when taking triptan cocktails of pills but they worked. So for the first 5 or 6 years or so they were like clock work they start up again late fall and then early February Then one year l hardly had any at all. Didn't know why either. My neurologist gave me a prescription for the shot in the back of my neck had it twice , but it did not work. A couple of years back l got on oxygen and l found that it really helps , it stops them before they build, hence no more sumatriptan or Rizatriptan to kill the pain . I still get shadows at times that linger , but now I take Verapamil 80mgs three times a day and that keeps away for good. I don`t get off the Verapamil at all now. I live in the western part of Canada I am a senior now ,and also male, but when they started I was in my late fifties. We travel a lot and I find that the atmospheric pressure has a lot do with headaches as well. I hope this helps as you are not alone with this condition. Hawk

I very much appreciate this report, and as you say, it probably couldn't hurt for people to give it a try. It's wonderful that you have experienced this relief! I will say that you are far from the first person who has reported here on trying CBD, and some have indeed reported good results -- though not a "cure," which is not a word we use here lightly, and surely not until at least a couple of years have gone by. If you (or anyone else reading here) want to see past reports related to CBD, just put CBD in the search bar located at the top of each page (here's an example: https://clusterbusters.org/forums/topic/5581-cbd-i-know-i-know-but-bear-with-me/#comment-56361). Of course, it is possible that through your research you might have hit on just the right oil and/or just the right dosage and/or who-knows-what other "just right" thing that gets it all aligned. If you don't mind, I have a few questions/requests: Two questions here: (1) Did you continue dosing with shrooms? (2) Would you point me to one of those videos you mention, making that specific recommendation ("small micro dosages of 0.4 grams every 3 to 4 days")? As the first site specifically created to encourage/help people to use psychedelic substances to treat CH, we try to keep track of what people are saying out there about how to do it, and I have not seen videos making this recommendation (which is different from what we have learned here about the best way of treating CH with psychedelics). As people here know, I like to dig into the research, so I have the same request: Would you be kind enough to point me to one of the studies you found showing this deficiency in people with CH? I have tried googling, and I have found research about hormones lacked by people with CH (one study, for example, says "CH often show accompanying neuro-endocrinological changes such as a blunted circadian rhythmicity of hypothalamically regulated hormones including testosterone, cortisol, growth hormone, thyroid-stimulating hormone, prolactin, melatonin, follicle-stimulating hormone, and luteinizing hormone..."), but I haven't located anything about endocannabinoids and CH.

Follow your instincts & wisdom & knowledge of your own body, Jimmy. Adaptation for survival. On Verapimil you wrote on November 21st: "...it makes me feel very "off" and like I'm going to have a heart attack or seizure. And I feel very nervous exercising or exerting myself while (I) take it. " Being active & outdoors on average 2+ hours/day is the game changer that shifted my "new normal" for my Chronic CH. We are all unique physiologically & changing too. Exercise sounded insane to me 16 years ago when I had Episodic CH. When you are able to go 5 days without meds that are blockers (& cause rebounds) it may be possible to try busting again with better results. Have your O2 ready & cold caffeine if a CH hits. Ginger soft gels & CBD/THC help me with nausea. Still busting every 7 days since starting out with every 5 in September after getting hit at the CB Conference & getting rescue O2 & compassionate support & encouragement from our CB family. Grateful. Best wishes.