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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

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, 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

...mee...2 days or 2 weeks post cycle...depending on the need and the courage...

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...

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.

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.

Ideation, yes. For the numbers on this board, I have no idea. I know we as a demographic are more likely, I mean thus the name. If you have a plan I implore you reach out to a friend, a help line, a doctor, someone, the step from just thinking about wanting this shit to end permanently to having a specific set of steps in mind is a huge step and rather large red flag, so talk to someone, reach out.

I will definitely try to get a second opinion. I’m on a wait list for a headache specialist, hopefully they will give me more answers!

You stay strong! No matter what we are all here with you!

....no particular place on head is definitive..... but anywhere the trigeminal nerve goes is a possible. my pain was a straight red hot poker from temple thru eye, into tooth..... ymmv

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.

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.

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

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!!!"

Early arrivals....

Hi Erin, I think anyone that suffers with an extreme headache condition not only belongs here, but can and will benefit from being here. I have read many a post from those with both HC and PH. Some have benefited from CH methods of maintaining pain free time as well as experienced a community of folks that understand pain in a way that non sufferers just can't comprehend. Sometimes it helps just to know you're not alone in your pain..

I recently heard about your organization on NPR and was immediately drawn in when I heard the words “cluster headache.” It’s rare to hear about this condition, and as soon as it was mentioned, my ears perked up. Other than my dad, I’ve never known anyone else who suffered from this debilitating condition, which is why I felt compelled to share his story after hearing the NPR segment. My dad was a strong, tough man—a former Marine who served in WWII. On the outside, he was all grit and determination, but he had a soft heart, especially when it came to his family. He loved his life and the people in it, and he rarely complained about anything. From what he told me, his cluster headaches began when he was 22 years old. The pain was excruciating and would nearly knock him off his feet. It was always the same side of his head that was affected, with that side looking flushed and reddish, while the other side appeared normal. During an episode, my dad had to retreat to a dark room, sitting upright because lying down only made the pain worse. The headache would eventually pass after about an hour, but it left him drained. My dad’s headaches were cyclical. He told me they would return every 18 months, like clockwork. Despite the immense pain, he never complained or wanted to burden anyone with his struggles. But these headaches were one of the few things that truly brought him to his knees. At 60, my dad was diagnosed with metastasized lung cancer. He underwent chemotherapy and radiation, and remarkably, he survived until just before his 65th birthday. He was an incredible fighter, enduring everything with the same quiet strength he had always shown. What stands out to me, and what I wanted to share, is that from the time he began cancer treatment until his death, he never experienced another cluster headache. Listening to the NPR report made me wonder if the chemotherapy or radiation somehow alleviated his headaches, and I thought it might be worth sharing this information with your organization.

Hey guys, so I saw the neurologist this week, he was actually pretty thorough and listened to what I was saying. I was pleasantly surprised. but he doesn’t think I’m having cluster headaches, and thinks sinus headaches instead. He explained his reasoning and didn’t just dismiss me; What he said did make sense, the pain is primarily in my sinus area and I don’t get the stabbing pain in/behind my eye like is described. My pain is above and below it and feels like pressure not stabbing. But, it’s so extreme. Like never below an 8 but very often a 10. Unless I’m just like, really a baby about pain. Are sinus headaches that bad?? And can you get them multiple times a day for 3 months!? I’ve never had pain like this before in my life, it was even worse than my appendix bursting! It is true that I didn’t have the eye watering/nose running either, or my pupil going funny, at least not that I noticed. And my eye never drooped, even though it felt like it was, when I’d look at it it was fine. The only automatic symptom I got was that the pain made me feral. I had to pace around and yell and flap my arms during the episodes, like a compulsion. But he said that was probably my anxiety (I do have a diagnosed anxiety disorder but it has never manifested that way before) and the fear and pain making me do that. But I also didn’t have sinus congestion. So idk how I can have a sinus headache with no congestion? And they did a CT of my sinuses and said they looked fine. He said I could have a wisdom tooth on that side that is pressing on the sinuses, or the roots have grown into them, or even an infection or abscess. So I have to go to a dentist and get a CBCT to rule it out. But wouldn’t that show on the ct? It’s all very confusing to me. also, although most of my episodes happened at different times each day I almost always had one at 11am and 2pm and always right after I fell asleep. And they were always 2-3 hours… So I don’t know. I suppose that could be a coincidence. And the fact that they kind of slowed down and then stopped is weird to me too. he did say to keep monitoring it, writing everything down, and that he’d order an mri just to check there was nothing else. And that if the pain comes back to go to him again. He said we could reevaluate at that point to see for sure if it’s CH or sinus. At least he is open minded, and at least I have no pain for the moment. I like that he is investigating every avenue. I don’t know, he was very nice and like I said he did listen to my concerns and answer my questions. I felt heard. But I don’t know what to think! anyway, I might just be a huge wimp about pain I guess!! I’m sorry to all of you with true CH, I feel like I’ve been mocking you now! I haven’t, at least not on purpose! it really was the worst pain I’ve ever had. but I wanted to say thank you to everyone who took the time to read my posts and give advice and encouragement. You are all so helpful and caring, and I felt real hope for the first time during my ordeal when I found this board. The support that you offer here is so important for people who are scared and in pain and don’t understand what is happening to them. So thank you again and wishing you all cozy, pain free days ahead.

I probably have said this before, but there's no harm in starting the vitamin d3-based anti-inflammatory protocol now. Since you're looking just to build up your level over time (to help prevent or mitigate a next cycle, if there is one), you don't have to do anything "drastic" like the loading process. D3 regimen - ClusterBuster Files - ClusterBusters

Never hurts to get another opinion. I'm seeing a new Neuro myself - it's been ages because I had pretty much given up on doctors. He ordered two MRIs (says they're the best method vs PET scan, fMRI or CT - his opinion), but the soonest I can get them is September, so more waiting. My situation is complicated because I have chronic daily headaches and hormonal migraines since puberty that can still hit even though I'm well into menopause. The possible Cluster Headaches have been around for many years but no one would touch the diagnosis.

This is so common, I had a maxillofacial surgeon tell me I had clusters after a root canal did nothing to help me. You never know what type of doc your gonna get until you meet them for the first time. My doc not only knows clusters but also looks at and supports this site. You may luck out and get a clear diagnoses and find out its not clusters (that would be ideal) or you may end up having clusters(not so much fun) but at least you will know what path you will need to take. Your above description sounds like clusters to me for sure, you also seem to have a somewhat upbeat attitude about this knowing the type of pain your having. Keep your head up and just take it one step at a time and we are all here to help answer any questions you may have.

Well at least you've braced for that in case it happens, but hey you never know, you might get a good diagnosis out of the deal. Especially if this neurologist is a headache specialist. It's unfortunately true that regular old garden variety neurologists are thought of us as often being ill informed regarding CH. I bet you've seen that this is indeed some straight up classic CH behavior. I've known some diagnosed CH'ers that mainly get hit in the temple (upper trigeminal), as opposed to the behind the eyeball routine I got used to thinking of as the CH standard. It sure sounds like how a cluster cycle often ends - CONGRATS ON MAKING IT THROUGH, and now hopefully you'll gain a nice long remission. Yep - all they can really go by is a description from the patient, and your descriptions seem fine. Best of luck and results with the upcoming appointment. I'd say don't make too big of a deal out of it - if the doctor isn't right, just set this as another appointment/doctor to ignore, and seek out a headache specialist while you're in remission. They can have long waiting times, but you don't have to be in an active cycle to go in and get a diagnosis.

Hello,and thank you all for your answers! In monday i visited my neurologist,he suggested to try Vydura. I took the first pill on Teusday afternoon!and as a miracle headached gone,just a small pain or shadow from time to time. Wednesday - Thursday - Friday i woke up and waited for pain to come- once the pain came i took one Vydura per day and like magic it was gone all the time and the whole day! The pill is expensive , around 30 usd But after 7 months of everyday pain 4 times+ per day and around 10 years dealing with the beast it s the first time that i am excited! Still want to see how it will work in the long term and if it can keep it sleeping, but after immigran that lasted for 3-4 hours this damn thing keeps me pain free for the whole day!

Hi all, I'm Anna and I help manage Clusterbusters ClusterBuddy program. I have a request BUT I also wanted to take a moment to provide a bit of information as well about the program. My request is I currently have a need for more chronic clusterheads who have lived experience and feel up to helping someone newly diagnosed or has newly found Clusterbusters and really needs someone who "gets it" and can help them find some things that may help them- they may not have a doctor who knows how to prescribe correctly, may not know what to ask for, or may just need a listening ear. So a bit about the program: ClusterBuddies is a peer-to-peer and one-on-one program that connects you with a supportive, empathetic, knowledgeable, and experienced volunteer who understands life with cluster headache and can say, “I’ve been there too.” We provide monthly groups where we explore topics or share our experiences of helping someone else. You can reach out to me or another member of the team at any time. If you would like to come alongside someone and be their Buddy (we have a strong need for chronics, but episodics and those who have experienced both are welcome to apply!) https://docs.google.com/forms/d/e/1FAIpQLSeFvIXjreXUQ685AYZ0y0ehxCMOLFr3ODw2JOHY8SgvSF1xZA/viewform If you are that person that needs someone who gets it - you can apply here - no one should go through this alone- and we know many have never gotten to speak with another person with cluster headache- we want to connect you. You can apply here: https://docs.google.com/forms/d/e/1FAIpQLSet22ryEOeToWOlr6yLXXJsziCfnsPpl3P4QyY2qjVuPNV6lw/viewform

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

...old saying...Dr B i believe: if you are not sure a med is working...it's not! but, when you say "cans" it sounds like that faddish and worthless "Boost". you need at least 15 lpm, a proper non rebreather mask, and a breathing technique that works for you. at best an O2 abort takes 5-8 mins...a boost can gives less than 1. you ALREADY got the breathing technique which is a highly effective one for many and the type advocated by the expert on O2. get thee some tanks (not a concentrator) for pure oxygen. and to paraphrase @CHfather, if the O2 doesnt work its one more diagnostic clue to rule out CH. it sounds to me that either you have a very odd type of CH or one of the others he mentions.. best jon

..LC...as the saying goes...we hate the reason you are here but glad you found us...welcome. best jon

I stock pile SAMITRIPTAIN all through year, I don't use them but I've got them if people need them

Great news, stella'! (In the US, Vydura is Nurtec.)