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Hi @CHfather and @dhuddly. Sorry you find yourself in our company there dhuddly, I haven't been on past couple weeks with some life changes I alluded to above and a number of projects on the go. I would appreciate links to studies you've read, always keen to expand my knowledge of the vitamin D3 literature. Here are the studies and their findings relating to the dopaminergic system in CH published last year for your reading and interest. What I would say above and beyond these studies, the work that has come out over the past number of years in CH space makes it fairly clear that between the active bout periods in episodic CH, the patient does not return to a normal baseline, the attacks may stop but there are perturbations that extend into the interictal periods that give me some level of assurance that I am doing the right thing for myself in terms of staying on the anti-inflammatory regimen 365 days of the year. I also hope that in doing so, I am providing an additional level of protection against developing other disease. I have more recently revisited Dr. Gominak's work (a contributor in part to the regimens inclusion of the B-Vitamins) and believe another reason for the regimens efficacy relates to vitamin D3's influence on the composition of the gut microbiota and the maintenance of epithelial tight junctions. Given nearly every cell expresses the VDR and the lack of formal studies in CH, it would be impossible for us to confirm Pete Batcheller's original hypothesis as to its precise mechanism of action (and as you mention, partial or non-response) but I think he is on the money with the umbrella thinking that it's underlying mechanism is the up and down regulation of genetic products which have the VDR sequence in their promoter / enhancer or silencer regions on DNA. Dysfunctional mesocorticolimbic circuitry in cluster headache. Ferraro et al. (2025) This fMRI study used a "Monetary Incentive Delay" task to probe the mesocorticolimbic dopaminergic pathways. Chronic CH (cCH): Patients exhibited blunted activity in the Ventral Tegmental Area (VTA) - a central dopaminergic hub - during reward anticipation. They also showed an imbalance in the pathway between the VTA and the medial prefrontal cortex (mPFC). Episodic CH (eCH): Patients showed intact VTA responses but abnormal mPFC activity, which the authors suggest may be an early sign of emerging dysfunction in the VTA-mPFC dopaminergic pathway. Conclusion: The study suggests an abnormal dopaminergic state in chronic patients that is distinct from affective disorders (depression/anxiety). Uncovering the neurological substrates underlying restlessness in cluster headache - A functional MRI study Chen et al. (2025) This study investigated the neural correlates of restlessness/agitation, a core clinical feature of CH. Substantia Nigra (SNpc): Patients experiencing restlessness showed increased functional connectivity between the Substantia Nigra pars compacta (SNpc) - a dopamine-producing nucleus - on the pain side and the Locus Coeruleus (noradrenergic) on the non-pain side. Frontal Inhibition: The study found decreased connectivity between the pain-side SNpc and the superior frontal gyrus, suggesting a disruption in top-down inhibitory control contributes to motor restlessness. Neurotransmitter Imbalance in Cluster Headache: A Systematic Review of Mechanisms and Therapeutic Targets Pellesi et al. (2025) This review aggregates data from multiple biochemical studies regarding dopamine levels in CH. Platelet Levels: Citing D'Andrea et al. (2006), the review notes that platelet dopamine levels were significantly higher in patients with episodic CH during both active bouts and remission compared to healthy controls. Plasma Levels: Citing D'Andrea et al. (2017), the review reports that patients with chronic CH exhibited higher plasma levels of dopamine compared to controls. Cerebrospinal Fluid (CSF): Citing Strittmatter et al. (1996), the review notes that CSF levels of dopamine were not significantly different between CH patients and controls, though norepinephrine was reduced. Autonomic dysfunction in patients with episodic cluster headache during remission period López-Bravo et al. (2025), This study summarizes previous biochemical findings in CH. It cites D'Andrea et al. (2017) regarding Abnormal Tyrosine Metabolism: Chronic CH patients show increased levels of dopamine and its precursor tyrosine in plasma. The authors interpret this anomaly in tyrosine metabolism as a potential predisposing factor for the chronification of episodic CH. Thesis: Felicia Jennysdotter Olofsgård (2025) Jennysdotter Olofsgård (Thesis) Genetics: A meta-GWAS identified WNT2 as a new risk locus for Cluster Headache. The author notes that WNT2 is known to be involved in dopaminergic neuronal development. What is seldom discussed in our community is the psychological and personality dimension of CH and how that relates to this topic. Kudrow and Graham were notably candid in the 1970s. I hesitate to be quite so direct, yet many of the personality characteristics they described feel uncomfortably familiar, as though my name might as well have been written beside them. If I may delicately say @dhuddly, from your posts and your manner of written expression, you come across as highly intelligent, thoughtful and kind. You have also mentioned being a full stack developer (I saw that response on a possible CB app - thank-you!), someone your friends describe as operating at extraordinary speed. I want to be clear that I am not attempting to analyse or explain you, rather, those observed qualities deeply resonate with me and provide a useful reference point for describing how I have come to interpret similar tendencies in my own life, over-achievement, high intelligence, tendency to work at a million miles an hour to name but a few. So... here's my story and my take on those qualities in the context of my life journey and CH. My father died before I was born. Throughout childhood I struggled to understand, let alone regulate, the emotions associated with that absence. In adolescence this unresolved grief drifted into substance abuse. Later, the same undercurrent appeared to transform into an intense drive for achievement, knowledge, and ultimately explanation. A life organised around such a pursuit rarely tolerates stillness. Pausing to enjoy simple pleasures can mean confronting emotions one has never properly learned to process. I am still learning how to do that. My sense, shaped by both experience and reading, is that unprocessed anger, grief, and guilt can sustain a chronic autonomic bias toward fight or flight, with downstream effects across our physiology. Viewed through that lens, it is perhaps unsurprising that my nervous system, which has otherwise been remarkably resilient, shows points of vulnerability. I cannot claim definitive evidence that CH, or another unique and uncommon disorder I am afflicted with - vocal cord dysfunction, arises from such experiences. This remains an interpretation, not a conclusion. The closest conceptual framework I have encountered is found in the work of Dr Allan Abbass, particularly his writing on overcoming emotional resistance through Intensive Short Term Psychodynamic Therapy. I feel his work and this topic deserves more discussion, as confronting as these topics can be. Link. Anyway, I pray I have not overstepped and I welcome you here with open arms. I am glad to connect. Craig.

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Hey folks, my name is Knyaz, who want to make more easy our lives and i have created "Migraine Tracker: Relief Pain" app which is serve for us. I need your help and feedback what i should add or delete pelase help me. App link: https://apps.apple.com/pl/app/migraine-tracker-relief-pain/id6755659669 WebSite: https://www.migraine.live/

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!

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

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

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!