Leaderboard

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.

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

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

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:

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!

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

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!

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.

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, 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?

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 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.

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.

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.