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Come chat with us! This is our annual virtual gathering where Bob Wold, members of the board, and members of our community gather to chat, learn, and just be together. Patients, care partners, supporters, and friends are all welcome https://us06web.zoom.us/meeting/register/jnmTEWaeQAela08Ij0PBTg

I wish I had never started the Verapamil to begin with. I was put on it and was up to 1080 mg a day. Side effects sucked for me, not being able to feel from my knees down and swollen feet all the time. I took myself down to 120 twice a day without any change in my cluster frequency or pain level. I think the doctor I had at the time just had no clue and kept upping the dose. I finally was able to come off the verapamil after 10 years due to a newfound treatment. The D3 protocol is a cleaner option and I feel that I have benefited from that a little more that the Verapamil. @Crispo follow CHfather's post and links he will not disappoint!

Hi @Nikola, I've probably made mental note of this especially since it corresponds to my own experience, but I've seen many report extending remissions as their decades with CH hurl by. In fact for nearly a couple decades, remissions between my bouts with episodic CH (which started around 1980) were ever-increasing in length, something I imagined that if I'd kept track, those extensions might have correlated to some sort of Fibonacci number series. The bouts themselves extended also though, increasing in length from a couple weeks to 2.5 months, and at some point the attacks increased in severity, with the individual attacks going on as long as 3 hours, compared to maybe 20 minutes or so with my very first inaugural attacks. This increased-severity deal could have been spurred by one truly honking drug cocktail I was prescribed at a point, though imitrex, the most oft-accused drug for causing such issues, wasn't even available then. I still find myself with nice longgg remissions, but not predictably ever lengthening - I've had shorter ones following longer ones, so no pattern anymore. The blue 'New Users Raed Here First' banner up top of the page here ^^^^^ provides introduction to the manner in which many of us have successfully thwarted the Cluster Bunny when it comes a 'knockin, and the Basic non-busting information is good too:

Welcome to the community @Nikola, sorry you have the need to join us!! Unfortunately, the short answer is there really isn't a definitive answer to your question!! ive been a episodic clusterhead since 84.....42 glorious years now......before I got here 16 years ago my cycles we're fairly predictable.....18 to 19 month remission and 5 to 6 mo cycle usually beginning in August. But I know many folks that get 2 cycles per year and always have.....the untreated Beast truly has a mind of it's own!! Couple things you might look at here are high flow oxygen for aborting individual attacks, and the anti inflammatory vitamin D3 regimen to lessen the frequency and severity of attacks. Dallas Denny

Hello, I am new to the forum. I've been having episodic CH since 2012. An episode normally lasts 1,5-2 months, I get 3-4 attacks a day. They last from 15 to 25 minutes. Normally in the night, but it can occasionally switch to daily periods. The pain is unbearable as you know. Since CH started I usually had two periods a year, winter and summer. As time passed it came down to once a year, normally winter. Since 2020 they occurred even less frequently on 18 months, and now it has been 2,5 years that the episode didn't occur. And it came back now. My questions is: Is this maybe an indicator that they will be less and less frequent in the future or it doesn't have to mean anything? I was so happy that two and a half years I was pain free and now I am depressed really. I will go trough this of course but really hope that for the next two years might be living without CH. Please share your experience and point some relevant studies if any regarding my situation. Thank you very much. I am 45 by the way, if that is important.

80/day is very unlikely to benefit you, and I wouldn't hope for much from 160/day, either. (240/day is pretty much the most standard starting dose, increased over time as needed.) It seems that immediate release works better than extended release. Also, it takes time for verap to get into your system and help at all. Could be that your doc is starting with extreme caution for some good reason, of course. Often, a course of prednisone is recommended to at least hold off the pain while the verap is settling in. But, really, the D3 regimen is a better preventive for most people than verap, with a lot fewer potential side effects. (see attached) What else are you using for your CH now? You might want to look at this: Basic non-busting information - ClusterBuster Files - ClusterBusters. Also, I have attached an older summary of CH treatment options. It's old enough that it doesn't mention the newer CGRP drugs, but I think what's there is still mostly valid enough as a point of reference. Quick Start Guide - Sept 2023.pdf GoadsbyCluster.pdf

I'm getting pretty bad CHs. My GP has - yesterday - prescribed 40mg Verapimil twice a day. Having read up on this, 40mg seems like a very low dose, and I'm wondering how effective it's likely to be. I could myself increase it to 80mg by taking two tablets morning and night. What do people think?

Yeah it's a long similar story as what im finding out through reading various accounts and explanations that other cluster survivors describe. The undiagnosed ADHD is the big key for me because the cluster headaches started for me in May 2025, 2 days after starting vraylor which was not something I easily agreed on but since id spent over 25 years treating anxiety with SSRI, SNRI, Benzos and counseling, I decided last year to talk to my providers about treating the ADHD that has always been crazy noticeable about me(not in a bad way I swear lol) that maybe that might actually cure the anxiety and it did. But not before a provider wanted to rule out one more mood disorder before moving on to treating the ADHD. I felt at the time that medical history should matter more because honestly it felt like mine was worth nothing. But I'm a good patient. So I started vraylor and day 2 the clusters hit. Day 3 I easily decided that vraylor was never going to enter my body again. Days 3, 4 and 5 were bad. The clusters started around midnight each night. Than started progressing to earlier, than more, than earlier, than more and eventually 8 weeks later July 24th was my last one. I started ADHD meds the following month and realized or felt that Dopamine was something worth looking into but not for treatment for CH but more like there is a link between dopamine, serotonin and CH. That led me to find many published research papers on dopamine, serotonin, mast cell(this one hurt to learn the wheels of profit because of the results of triptan were widely accepted that mast cell research has been dormant ever since as far as I can tell) that was around late 80s early 90s when triptons came out. This ties directly into my first couple forum reads on here where some of us guys use cialis and apparently I am the oddball of the general consensus of it being agreed on as a trigger for CH(thankfully) because ive taken it for years. Sometimes everyday, sometimes weekly but that led me to search why the heck something that is like 50 to 1 on triggering vs has never triggered me could be. Dopamine deficiency or untreated ADHD effects the way vitamin D(d3 reg) will work in us. D3 works because it boosts dopamine production in the hypothalamus, the clock,and not just because it's anti-inflammatory. The people it doesn't work for probably have dopamine low enough that D3 alone can't get them above the tipping point. I've not found any research that connects these but the individual researches we see all touch on it in some fashion or another. I have been hesitant to comment and share these findings because as CH survivors we know. We know that the pain of the beast is more than any one person should have to suffer through and I see a loving community here. I'm not trying to burst any bubbles of comfort for anyone. I'd love to hear about or find more on CH->NO->DOPAMINE(both in terms of ADHD and the traceable chemical pipeline)->D3->hypothalamus. Please keep in mind I am not saying take speed. I'm just saying why isn't neuroscience, immunology, psychiatry and pharmacology not communicating their findings from decades of research because between the 4 of those fields I see plenty of I dividual bits and pieces of everything we say clusters are and feel like. For me mentally, I had to investigate this because once I got through the clusters, and started ADHD meds for the first time in my entire life, the anxiety stopped. Like really stopped and that in itself is huge for me. But having to go through the clusters first, like directly before it. Just to rule a mood disorder out that 25 years worth of that same thought already ruled out and vraylor being the trigger to the worst pain and experience I've ever endured? The convergence of all of this is why I probably spent the first week of the clusters not understanding how such a simple decision with a med triggered it. Took me several weeks to mentally get past that fully. I haven't done the D3 regimen, or mushrooms or the other stuff I'm reading about on here not because I'm anti any of it but because im new to this still. They haven't returned yet for me. I'm assuming the shadow I keep reading about on here is lingering around though. Sorry for the longwinded read folks.

What a great post. Thank you. I'm looking forward to perhaps a follow-up from @Craigo This seems possibly valid to me. I'm just wondering how you reached the conclusion, and why "undiagnosed." In Rozen's big 2011 study of people with CH, he asked about other medical conditions that people with CH have, but it doesn't seem that ADHD was among the possible answers. Someone at ClusterBusters might know whether another big study is planned (there was another one, after Rozen's, by Larry Schor), since CB is a source for research subjects. It seems like this is a question that might be asked (at least about diagnosed ADHD). Also, regarding dopamine, I admit to not having studied the two reports I posted in the research/scientific news section below, but I guess I could imagine that increased dopamine production accounts in part for the effect of D3 on mood.

The D3 regimen works for a lot of us, and the usual explanation is 'anti-inflammatory.' That's part of it, but there's actually a deeper reason. Vitamin D3 at high doses upregulates an enzyme called tyrosine hydroxylase, which is the rate-limiting step in making dopamine. And it does this specifically in the hypothalamus, which is the clock that runs our cycles. So when you're loading D3, you're not just fighting inflammation, you're helping your brain make more of the chemical that keeps the beast on its leash. That's also probably why it doesn't work for everyone. If your baseline dopamine is already really low for other reasons (like undiagnosed ADHD, which is way more common in CH than anyone's studied), the D3 boost might not be enough on its own to keep you above the tipping point. Doesn't mean it's not doing something it just means some of us need more than one thing pushing dopamine in the right direction. For me I have already found huge connections between ADHD and CH and I am greatful that this community is here because the suffering is too much for any one person to try to navigate alone.

Hallo! Currently operating on an available budget of £5K, but aiming for £15-20 total, to cover the full process including post-prod, and festival submission etc... Initially, we were planning to run it on the shoestring/low budget end of things, but my new director is keen on securing proper funding so we're not compromising on quality or fees. We have a possible producer on board now and links to a few potential backers, but all interest is good interest! The script is currently 14 pages and we'll be aiming at 10-12minutes or so Cheers!

What’s ur expected budget and running time?

Hi folks! I'm an actor and writer living in London, and I have written a short film about living with Cluster headaches. It's based entirely on my own experiences, though descends into some more abstract representations of the pain, for which I've taken inspiration from forums and conversations with other sufferers. Currently it doesn't delve into 'busting' though if I can get it made, I may well pitch for a second or a series. It's called 'Clusterfu*k,' and I have a director on board and the beginnings of a budget as well as some locations and talent. Basically, I'm wondering if anybody knows of any organisations or individuals who would be interested in helping support, endorse and/or finance the film? I have a number of contacts in the screen industry and my new director is very well connected, but as with all arts at the moment, funding is going to be the sticking point. For me the film is an attempt to visually communicate the difficulties, pain, and sometimes amusing quirks of living with this illness and trying to get on with life. Overall, I've been relatively fortunate in my response to medications (verap, O2, Triptans etc), while living in the UK means I have access to NHS oxygen, which is a gamechanger. I guess I'm hoping to raise some awareness, communicate the actual experience of the headaches (which often feels near-impossible and a stumbling block for future engagement/research) and create a platform for myself as an artist. Let me know if anything jumps to mind, or if anyone is particularly interested in talking about it further. Enormous thanks and solidarity, Angus

I'm not sure how a PPI would help for CHs. In fact, one of the common side effects is severe headaches. https://www.nyheadache.com/blog-posts/ppis-are-the-worst-but-all-heartburn-drugs-increase-the-risk-of-severe-headaches#:~:text=A new study just published,having migraines or severe headaches. "A new study just published in Neurology showed that people taking proton pump inhibitors (PPIs) such as omeprazole (Prilosec) and esomeprazole (Nexium) have a 70% higher risk of having migraines or severe headaches." I take rabeprazole, for GERD; but, started taking it after successfully busting. So, I can't say whether it has had any effect on my CHs. But, I just don't see how it would help.

Two studies (bold and italics are added by me) 2024: The effect of vitamin D supplementation on depression: a systematic review and dose–response meta-analysis of randomized controlled trials | Psychological Medicine | Cambridge Core The impact of vitamin D supplementation on depressive symptoms remains uncertain. This study aimed to investigate the dose-dependent effects of vitamin D supplementation on depressive and anxiety symptoms in adults. We systematically searched PubMed, Scopus, and Web of Science up to December 2022 to identify randomized controlled trials evaluating the effects of vitamin D3 supplementation on depression and anxiety symptoms in adults. Using a random-effects model, we calculated the standardized mean difference (SMD) for each 1000 IU/day vitamin D3 supplementation. The GRADE tool assessed the certainty of evidence. Our analysis included 31 trials with 24189 participants. Each 1000 IU/day vitamin D3 supplementation slightly reduced depressive symptoms in individuals with and without depression (SMD: −0.32, 95% CI −0.43 to −0.22; GEADE = moderate). The effect was more pronounced in those with depressive symptoms (SMD: −0.57, 95% CI −0.69 to −0.44; n = 15). The greatest reduction occurred at 8000 IU/day (SMD: −2.04, 95% CI −3.77 to −0.31). Trials with follow-up ⩽8 weeks (SMD: −0.45, 95% CI −0.70 to −0.20; n = 8) and 8 to ⩽24 weeks (SMD: −0.47, 95% CI −0.70 to −0.24; n = 15) showed stronger effects compared to those lasting 24 to ⩽52 weeks (SMD: −0.13, 95% CI −0.28 to 0.02; n = 5) or longer than 52 weeks (SMD: 0.14, 95% CI −0.16 to 0.44; n = 3) (p group difference <0.001). Vitamin D3 supplementation had no significant effects on anxiety symptoms. In summary, this study suggests that vitamin D3 supplementation may effectively reduce depressive symptoms in short term. Further high-quality trials are warranted for a conclusive assessment of its impact on anxiety. 2025: https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2025.1622796/full Our findings indicate that vitamin D supplementation is associated with a moderate but statistically significant improvement in depressive symptoms..... This meta-analysis demonstrates that vitamin D supplementation significantly alleviates depressive symptoms (SMD = -0.36), particularly in subgroups with baseline deficiency (<20 ng/mL) and comorbid chronic inflammatory conditions.

I'm launching a new zoom support group for Illinois- everyone is welcome, though being able to connect to people in the area will be the main goal. Nearby areas are most welcome as the resources will be helpful to you as well. To get an invite you can message me your email address or fill out this form: https://forms.gle/kNpeB678DQzNyW9G7 The group will meet the 3rd Thursday of every month at 7pm CT. Feel free to drop in anytime!

Faraidoon is the headache researcher whom is leading the Psilocybin Efficacy and Acceptability on Cluster headache Episodes (PEACE) Trial.

Patient perspectives on research gaps in cluster headache Faraidoon Haghdoost, Dilara Bahceci, Candice Delcourt, Tissa Wijeratne, Rigmor H Jensen, Carl Cincinnato, Susan Tomlinson, Bob Wold, Vince Polito, Cheryl Carcel, Usman Ashraf, Bronwyn Jenkins, Anja Sofie Petersen, Jason C Ray, Emmanuelle A D Schindler, Benjamin Tsang, Chris Gianacas, Anthony Rodgers Published in Headache on January 21, 2026 Link: https://doi.org/10.1111/head.70031 Abstract: Objective: This study was undertaken to identify gaps in cluster headache management, highlight patient-prioritized research needs, and assess patient interest in, and preferences for, clinical trial participation.

Most of these studies were posted here on the forum, study by study over the course of 2025. For those wanting to look at some of the studies mentioned they are in my 2025 CH Research Notebook.

2025 Highlights in cluster headache Roemer B. Brandt, Rolf Fronczek Published in Cephalalgia on January 2026 Link: https://doi.org/10.1177/03331024251411870 Abstract: Cluster headache remains enigmatic with a significant unmet treatment need, especially in the chronic form. The steps made in 2025 have taken us further along the road to a true understanding of the still unknown pathophysiology, hopefully leading to a causal treatment.

(via google trad) When I see certain neurologists in France openly advising their patients to overdose on sumatripatan, some even administering up to 10 doses a day if necessary... And when we explain to them that their neurologist is wrong, we are generally insulted...

He might be more likely to see this if we include his handle here, @xxx.

Batch - I’m a 20-year episodic CH sufferer, and I’ve been following the anti-inflammatory regimen for several years now. Thanks to it, my CH had been in remission for the last 2–3 years. A couple of weeks ago, it came back - possibly triggered by a virus, a stretch of bad eating habits, or a combination of both. I immediately started the loading dose for both the anti-inflammatory regimen and the “Full Monty,” and I’m happy to report that my attacks only lasted about 12 days. Normally, my cycles last several weeks, so this was a huge improvement. I just wanted to say thank you for everything you do. Your work has truly made a difference in my life, and I’m incredibly grateful.

wow, thanks for pointing out this study. this could be huge for us Biological Mechanisms Implicated The study points to several pathways: Oxidative Stress Impaired antioxidant defenses (5-oxoproline) May damage brain cells Mitochondrial Dysfunction Energy production problems (orotate, 3-hydroxy-3-methylglutarate) Brain can't generate enough energy Neurotransmitter Imbalance Dopamine and glutamate pathway disruptions Lipid Metabolism & Inflammation Membrane signaling problems Inflammatory responses Methylation Pathways Betaine involvement suggests epigenetic mechanis Clinical Implications Potential Future Applications: Biomarker Development Could identify people at risk (though CSF collection is impractical) Need to find blood-based correlates New Treatment Targets Antioxidant therapies Mitochondrial support supplements Methylation pathway modulators Mechanistic Understanding Helps explain why cluster headaches occur Could lead to more targeted therapies

I am getting better at turning to AI for questions like this. I asked ChatGPT (which probably isn't even the best AI engine for this kind of thing): "What does this mean: In the forward MR analysis, 11 CSF metabolites were significantly associated with CH risk (P<0.05). The strongest associations were observed for orotate (β = 0.53, 95% CI: 0.23–0.82, P = 0.0006), betaine (β = 0.47, 95% CI: 0.16–0.79, P = 0.0035), and 5-oxoproline (β = 0.57, 95% CI: 0.17–0.97, P = 0.0053). In the reverse MR analysis, eight metabolites, including lysine (β = 0.015, P = 0.029) and kynurenine (β = 0.025, P = 0.020), were nominally associated with genetic liability to CH. Sensitivity analyses showed no evidence of directional pleiotropy or heterogeneity (all P > 0.05). This bidirectional MR study provides the first genetic evidence linking central metabolic alterations to CH susceptibility. While these results highlight potential metabolic biomarkers and mechanistic pathways, the findings remain preliminary due to modest statistical power and should be replicated in larger and ethnically diverse cohorts." In the blink of an eye, the answer that came was (formatting is much clearer in the Chat version; I have just pasted it here as plain text). NOTE that at the end it offers to go deeper: Maybe some of your other questions could be asked there. Well, I tried pasting it. I get an error message that says, The value entered includes a character that is not allowed such as an Emoji. Since I have no idea what that character might be, I guess you'll have to do the exercise yourself. I don't think you will be disappointed.