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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.

Hard for me to believe but we went live 15 years ago on the 27th of this month!! It's been one hell of a ride!! Dallas Denny

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.

My husband started getting episodic cluster headaches in 2002. They affected his life so terribly he lost jobs, and missed tests at college. He worried about ever being able to hold down a job, or be a functional person in society- if he was taken out for 6 weeks, 2-4 times a year. Imitrex nose spray helped but only delayed the headaches- they always came back, and the rebound was worse than riding them out to begin with as they were often longer headaches than the 60 minute ones he had. I loved this man, to see him in agony was torture in its own right. I resolved that if the cure to cluster headaches was ground up Mona Lisa, then I was off to France with a ski mask in my luggage. My research began, to see what others had discovered, since doctors were damn near no help. In 2008 I found Clusterheadaches.com and it helped. Oxygen brought relief in 20 minutes. I learned how to crack a tank and properly attach hardware and valves and it scared me to do but what of it. But that wasn't enough. He was tied to the tank on the wall or small portable tanks. The search continued. I found clusterbusters.com in 2009. I had never done any drugs but I bought spores in cash, grew two fishtanks worth, dried them, and micro-dosed him. He only had to do it 6 times or so before the cluster headaches were gone forever. He'd feel the shadows come on, microdose, do it again a bit later, and poof- no cycle. They eventually left and just never came back. He spent over 13 years cluster headache free (we had 25 amazing years together) before he passed away in his sleep at 49 years old from complications from sleep apnea. This man, who worried what would become of him, got a double bachelors with honors in History and Cultural Anthropology and then got a Masters with Honors in Secondary Education. He became a History Teacher. He was nominated by his students to be an educator hero in his first year of teaching. We had 3 beautiful daughters. He taught them to fish and camp and cook and laugh. We traveled extensively. He kayaked the Pecos River. We had a glorious life. And I am so thankful that he got out from the shadow of this disease. And he was able to stand in the sun and live unhaunted by it for 13 amazing years. I will always be grateful to Cluster Busters for what it gave to my husband. So, so thankful. From the bottom of my heart- thank you, from me (Lauren) and from him (Lucas) You gave the world back a good man, and we are all better for it.

That was me. In 2011 I had 257 cluster attacks (plus 276 normal headaches and 42 migraines). It was a bad year. My doctor-prescribed meds were actually making the clusters worse. I'd only had 63 the year before (and I thought THAT was a bad year). By October I had had enough. I was sitting at my computer with my calendar in hand planning the day to exit planet Earth. I decided to give myself 1 year to find a solution or else that would be that. Then, in that moment as I was selecting the day, I remembered someone had given me a link to this forum about LSD and Magic Mushrooms. At the time, I was just starting my journey as my clusters only started in Jan 2007. I still had other doctor meds to explore and things to try before I turned to hallucinogens. So, I bookmarked the site. But in that very moment when I was planning the end, I remembered Clusterbusters. So, I joined and started reading and asking questions. Within a few days, I started weening myself off Topiramate and I met with my GP to explain to her my plan. It took me 6 weeks to get clean of Topiramate (it was too fast, I should have taken twice that long). During all of those six weeks, I spent every free moment on this site. I studied the clusterbuster files and made friends. Once clean, I started on an alternating pattern of shrooms and seeds. I taught myself how to grow my own medicine, which was an amazing experience. I loved being in control of the process, start to finish. In 2012, my clusters dropped to 169 and I only had 3 migraines. So far this year, 2024, I've had a grand total of 2 cluster attacks, each lasting less than 30 seconds. I'm not even sure they are technically clusters, but they have all the hallmarks. Ultra-intense pain, watery eye, drippy nose, energy drop that lasts hours. But, all in a compact 30 seconds of terror. Also, after my first dose of shrooms, my post-traumatic stress attacks that I'd get after every cluster headache vanished. I used to rock back and forth, crying my eyes out for 30 minutes after every attack. Sorry, I'm talking about treatment, not suicide. I've gone off-topic. I don't have an issue with suicide. I know that's a bold thing to say, but I don't. I've had daily suicidal thoughts from the age of 7 till I was 41. I firmly believe that when my day comes, it'll be by my hand. But not this day. Not when there is a remedy. Not when there is hope. There is life after clusters. I can attest to that. OK, I'm still dealing with 400 headaches and migraines a year, but my clusters are so trivial I barely notice them when they do strike. You have to be prepared to fight. You have to be your own doctor, herbologist and test subject. You have to be prepared so you don't get hit out of the blue. Understand how to prevent them. Try the D3, try everything. Don't give up! You'll make me angry and I'll swear at you if you give up! Mox

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!!

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.

Yup jeebster, made this old man's eyes leak as well!! Absolutely wonderful and well written testament @LaurenAla! So very sorry for your loss!! As BeJeeber’s said, our supporters are our hero's......clusters are equally devastating for both the clusterhead and the supporter!! Thank you so much for sharing ya'lls journey with us Lauren...... ....Fair winds and following seas Lukas...

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.

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 asked an A.I. image generator to convey the dark agony of a cluster headache...

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

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

I have been there, I had the talk with my wife. Thank god things changed. Today I am still suffering with migraines and Clusters but have gotten peace within my self, I no longer prey every night that I will die and end this! Its a tough life living with extreme pain and having no controll over it. I have learned to love the good days and plow through the bad days. I can say that life is better when you love life rather than hate life constantly praying for death. I know that this is more like rambling but I hope you can find some peace within. Hang in there.

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.

Migraine buddy includes clusters these days It actually has great functions of adding meds or other ways that gave some relief or not. most ways of aborting are already in the app, so it's really easy to add them in a log. If it's not in there, you can create it yourself it's definitely worth a try. I think it's really helpful to keep track All I have to do is try to remember start/end times so i can put it in when it's over

It's astonishing to me how instantly tears can come to the eyes when reading this (especially the passing away at 49 years of age, but glorious life part). Thank you for posting this, replete with the ski mask, tank cracking etc. color . You are quite the example of an above and beyond cluster hero.

Thank you to all of you who have made this message board a place for community and safety and compassion. You have saved lives and offered hope to me and so many.

WOOHOO! Thank you to the moderators who put so much work into keeping this going! The forums are a wealth of resources but mostly amazing people who are helping those in need to connect to the information they need. Love you guys! Thank you! I don't post often but have read and gotten many answers and resources along the way of my own journey. And when I have posted or commented- the answers come quick!

Just want to say a huge thank you to everybody that started this forum, and those that keep the community going. I'm in my longest remission ever, thanks to the good people here. This is such an incredible resource for those suffering, and those that support somebody suffering. THANK YOU!

Glad to be here! Almost six years for me.

Well trying to express my gratitude for those before me and those involved with starting this site would surely fall short! My words may 2, but trying won't kill me I suppose. Thank you 2 all of the pioneers that understood the need for a place like CB, thank you for compiling experiences into a haven for folks like me, thank you for caring beyond monetary gain, thank you for having the insights to recognize the need!

Well damn! That just sux and bloze as the jeebster would say!! Sorry to see that the Beast is having his way with so many of us!! On a positive note though, I'm thinkin maybe the bastard Beast overheard a conversation I had in the past couple of days regarding DiMiTri and got skeered!!! After having heavy shadows all day I went to sleep at 9 last nite and woke up at 8 this morning......zero, zilch, nada in the hits department!! This after 2 back to back 6 hit nites!!! Feelin quite refreshed this mornin so my mantra at bedtime going forward shall be, " better behave Beast or I'll get DiMiTri after ya!!!"

I'm attaching a pic to illustrate parts of the regulator. When you turn the M tank on, the demand valve will be charged and ready to use. The mask flow control has no effect on the demand valve. You will leave it on "0" unless you use the O2 mask rather than the demand valve. You will need an adjustable wrench of sufficient size to attach the regulator to the tank and the demand valve to the regulator. Ensure the tank valve is closed before swapping regulators.

Features that make the severe LEFT sided head/face pain attacks more likely cluster include- rapid onset of attacks- CH attacks reach peak pain in a few short minutes, hence very quick ramp up, unlike migraine, and CH attacks last 30 min to a few short hours (typically an hour or two at most). There is a tendency to favor night attacks- so awoken from sleep with them- and there is no going back to sleep until the attack is over. These night attacks are earlier in the night- whereas migraine waking you up would be more likely morning. Any sensations in the area of CH attacks (head/face) in between attacks are shadows and less commonly shadows can be painful (milder than CH attacks). 95% of CH attacks are accompanied by tearing on the affected side or blocked nasal passage/running nostril on the painful side during the attack. Bad pain all day is not CH. Botox will NEVER work for CH. The metalic taste- may be medication side effect such as topiramate which can also cause tingling of hands/feet/face/tongue. Tongue tinging is a common experience with sensory aura of migraine- in which case it should fit with other aura symptoms. The aura symptoms do not exclude CH as an explanation of the left sided head pains. Experiencing more than one severe one sided head pain episode a day, and predictability of when an attack will occur ('circadian pattern') are commonly seen in CH. There are now many treatment options, guided by a neurologist/headache medicine specialist. Peace.

Yes, pretty normal. Lesser intensity pain between attacks? Also normal, commonly referred to as "shadows" This sucks @susie1984 - I'm no diagnostician, but "ridiculously painful, start behind my left eye and radiate down my face into my jaw and teeth and nothing is relieving them" sounds like classic cluster headache symptoms. Sorry you appear to have become a member of this club. If only there was some medical approach like botox that worked for CH like it does for migraines. BUT there are effective treatments!! The blue banner "New Users - Read Here First" at top of page here ^^^ links to some good starter busting info. That, along with the Basic Non-Busting Information could help you hit the ground running, and hopefully you'll be on the way to relief ASAP.

It makes me feel hopeful that more neurologist are becoming educated and familiar with CH. It's good progress for us bangers. Thanks for the share.

DAY 3 - Sunday We started our morning with yoga, lecturer, yoga teacher and yoga therapist Tiina Hemminki guided us to safe and relaxing journey, where one could notice the signals from our body following Tiina's soothing voice eyes closed. Yoga Federation of Finland has their own orientation of hatha yoga which is the one we did. Especially interesting were the notions how one can affect to different sides of your body just by thinking and also how we can guide our breathing via left or right nostril, in and out, using only your better non-Horton side for an example. (yoga moment starting and adorable Tiina) Next in line was OLKA coordinator Tarja Kulmala. OLKA means coordinated organizational and volunteer activities in the finnish hospitals. OLKA also helps non-profit organizations to reach their audience and connects them to hospital units. OLKA also has an app called Toivo (Hope) where you can find peer support for any condition you may have 24/7. We have done cooperation with OLKA right from the beginning. (OLKA coordinator Tarja) Last presentation of the day was an Art photographer and an Expert by Experience Riina Sorjonen who talked about peer support via her own story. Main focus was also on keeping up the inspiration in life and always looking for new fun things and not giving up on anything you have enjoyed doing in life. This too was something different and a beautiful closing performance for the great event. Planned Safe room sessions were cancelled due to lack of personnel but we had such an open, honest, wild, limitless and crazy vibe and discussions all the time that there really was no need for "safe space" - everyone and every space was safe. Presentation about psychiatric burden and psychiatric symptoms caused by Horton was cancelled as well. When planning the event we noticed that there seem to be no one in the local healthcare (psychiatry) that could talk about this subject - there were zero volunteers. So, this really needs to be covered next year. Tired but happy, until next year !

Hi @dehabel, Sorry to hear of the extended cycle you're going through. Unfortunately it's not uncommon in the "clusterverse". Tons of variables could be the culprit for this happening. Not sure where you are located but here in CA it's high allergy season which can be a trigger of sorts. My last cycle that was extended from 4 to 6/7 months occured during a terrible fire that chocked out clean air for most California's. Im not sure what you're injecting when you say sometimes you take a shot but im assuming some sort of triptans? If that is the case you may want to research how to split the dose as triptans can also extend a cycle. You did not mention what you are doing to prevent cycles so I feel it necessary to mention the D3 regimen as well as busting which you can read about more on this site if it interests you.

I had the pleasure of meeting Sammie during Headache on the Hill in March as she was part of our Texas delegation. https://www.theguardian.com/science/ng-interactive/2025/apr/23/cluster-headaches-magic-mushrooms-psilocybin?CMP=oth_b-aplnews_d-5

That is a very nice article!!!!!! My only wish, small in the context of how good the article is, is that RC seeds could get a mention in these kinds of stories. A discussion of them being generally legal to purchase and possess, highly effective, and generally tripless, would be very valuable for those folks who think MM would be too much for them, or too risky for them.

So strange to wake up and read this after having bad dreams all night about being in a house infested with big ugly yellow spiders (by product of all the time I've spent in the greenhouse latley i think). In my dream I was trying to vacuum them up, in hindsight I guess I should have been getting my snack on....

This is unrelated, except that taurine is involved. I post it here only because I just read it tonight, and thought it was fascinating, and taurine gives me the excuse. From What It's Like to be a Bird (great book!): "Chickadees mostly bring caterpillars to their newly hatched nestlings (they can collect over a thousand in a day), but for the first week or so after hatching the adults make special efforts to seek out spiders to feed their young. Spiders provide the nutrient taurine, which is essential for brain development and other functions."

In what seems to be an almost grey area with 'suicide' viewed as something problematic, we in Canada have access to MAID (Medical Assistance in Death), something I have inquired about, so in a grey area, I do have a plan, but if you ask about MAID you do not get sent to psychiatric, but if you mention having a plan you do. In any case, I see it as my absolute last resort. I feel you @MoxieGirlI am chronic and have up to 8 hits a day, every day, no breaks, with some powerful sleeping pills, I can knock myself out for 30 hours after a day and a half up but those are the longest breaks. I am still trying with the alternate methods but have had some really bad months, death in the family and any hallucinegenic is not great if you go in with a bad headspace and the current crop I have tends to really edge towards disassociating me strongly which is a pretty unnerving experience. All said, we have all wished an end in some way, but you need to reach out, talk, try anything and everything. And talk, to anyone, find a good listener, it goes a very long way in keeping it together.

This place and the wonderful people on here have saved my life, simple as that, words can't say enough, But thank you everyone involved in this forum

I can't just reply to questions and be done with it (so you can skip my reply if you wish). I work in psychiatric ward and get sometimes called to help when there are patients who are suicidal and have CH. Very, very often when CH is managed to get under control, the suicide plans vanish and again, very, very often never return. But there are people who have more complex problems and conditions and need help beyond getting CH under control. Then you need to keep reaching for help - relentlessly as long as you need, or better yet - find a support person who helps you fight. And it's incredibly tough when the things that work for others do not work for you - these people would need a community of their own. People with torturous chronic pain - whatever the diagnosis or no diagnosis at all, who have not yet found help and those who have found something that helps mixed in one group. I hope you keep reaching out and find help.