Why is the D3 Regimen not common knowledge after all this time?

[Bilal]

Hi,

I was diagnosed with cluster headaches almost 9 years ago and you can go back and read my posts from that time to see my journey. I was introduced to the D3 Protocol/Regimen by CH Father (God Bless You!) at the time. This protocol has genuinely saved my life. I've been CH free ever since I started it. But I recently met someone who's wife had CH and he told me that they had tried everything, I told them about the D3 Regimen and they had never heard of it. I tried looking up treatment for CH online and change my phrasing to get different results but I didn't see the D3 Regimen anywhere. 

It breaks my heart to know that this life changing treatment where all you have to do is take a bunch of inexpensive supplements to be completely CH free is not common knowledge. I was lucky enough to be guided in the right direction almost a decade ago, but I expected this treatment to be widespread by now, why is that not the case?

[BoscoPiko]

Not sure why but it's definitely sad that it's not a common "go to" treatment. My first thought is that CH is pretty uncommon in itself so that could play a role. Then you have the very much so common migraine that the D3 protocol works for as well which makes my second though lean toward the fact that you generally cant patent naturally occurring vitamins or minerals so there is no reason (monetary) benefit for pharmaceutical companies to bother with it. Tens of billions of dollars are spent annually on migraine medications and unfortunately there are financial incentives for Doctors to influence medication prescribing. 

[Bejeeber]

2 hours ago, Bilal said:

all you have to do is take a bunch of inexpensive supplements to be completely CH free

"Completely CH free" isn't what everyone on the D3 regimen achieves, but glad you've arrived there!

[BoscoPiko]

1 hour ago, Bejeeber said:

"Completely CH free" isn't what everyone on the D3 regimen achieves, but glad you've arrived there!

So true Jeeb. Unfortunately full and continuous cessation has yet to be achieved through the D3 regimen. Less frequent attacks, regular cycles and intensity of attacks has been greatfully experience from many on the regimen making it a very useful tool  for any CH sufferes toolbox. 

[Craigo]

Your post hits me in the feels. It really does. I would say it is changing lives. I have had one of those days, your post is timely and let me be as real as I can with you on what is a topic that lies close to my heart.

At least once, more often several times a week, I receive an email from someone who found www.vitamindregimen.com, come across Clusterbusters, a social site or watched one of the interviews with Pete Batcheller on YouTube. They rolled the dice on the regimen and got pain free. They write to say it changed their life. Even one of those emails is enough to justify every hour of advocacy. It’s worth it. 

I have spent over a decade now reading obsessively on this topic, not just to understand why and how the regimen may work, but to also understand why a percentage of people do not get fully pain free when applying it. Along the way I have interviewed some of the most amazing people in the vitamin D3 research space and with every interview, every study read, every question asked, I feel like I have moved a little closer to an answer and built upon my knowledge of the subject. I am so grateful Pete opened that door for me. That man is a global treasure.

It’s also perplexing because this week alone I have seen cluster headache social media channels suggest ginger, purple cabbage, and today, chewing on a lime. I should have become a fruiterer! I understand the premise behind criticism of the regimen or pushing it to the side as a bunch of simple pills. From the outside, a handful of vitamins can look just as batshit crazy as cabbage when stacked against the sheer terror of CH. I get it.

That is the real challenge. How do you communicate the regimen in a way that reaches more people, without overclaiming, without slipping into evangelism and without being lumped into the bucket of folk remedies? How do you communicate something that sits uncomfortably between patient-led discovery and clinical blind spots?

I may have an opportunity to do more having just resigned my job today with no intention of continuing on the same path / career. 43, soon to be jobless - very tempting to study and see what further value I may add to this important body of work. Never too old right?

Absolutely agree with you, happy for you to have found success with it and pleased to see you here on the CB forums! 

[dhuddly]

 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.

[CHfather]

What a great post.  Thank you.  I'm looking forward to perhaps a follow-up from @Craigo

21 hours ago, dhuddly said:

undiagnosed ADHD, which is way more common in CH than anyone's studied

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.

Edited Wednesday at 02:26 AM by CHfather

[dhuddly]

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. 

[Craigo]

On 2/11/2026 at 3:24 PM, CHfather said:

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.

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.