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@Nikkk I'll echo Craigs kudos for offering your time and skills!! I've lived long enough to become the elder statesman of the forum having been here since our go live date 16 years ago and counting!! That was Oct of 2009 and at that time the only online support sites were OUCH, clusterheadaches dot com which i think DJ launched in 1998.....and DJ was instrumental on getting us online as a yabb powered sister site. Although I've become the senior member, the jeebster AKA @Bejeeber and @CHfather got here in short order! I think Im safe in saying for all 3 of us that those years of the forum before Facebook were vastly different than they are today!! I've made several appeals at past conferences for folks that I personally know and who were once active members to take a little time and comeback and be a part of this community to no avail!! Although we transitioned to the current forum software probably 10 years ago, it is still a "static" type of board vs the "dynamics" of Facebook. As a result the forum has become just a few active members who support the few clusterheads who happen to find us before they find the many support groups on the "Book"! I was able to have a conversation with our fearless leader Bob at our Conference in Dallas this past September regarding the future of the forum.......I walked away from that conversation not anticipating any upgrades!! However, I can't speak for Bob and will definitely bring this thread to his attention!! The real tragedy is that this is the only place that you get reliable, time proven advice on the "clusterbusters protocol" while in the Facebook groups the term "busting" has become so bastardized that the information and advice is often worthless!! I used to keep my eye on those groups but eventually got tired of sounding like a broken record as I tried to offer correct information when I saw bullshit advice being given and finally just gave up posting there!! As to an app, although I've never used one, I know that there are several out there in use......in fact we had a member here several years ago that developed an app called "Nobism" if I'm remembering correctly......but I haven't heard anything about it either here or Facebook in at least a couple years! Once again, kudos and welcome to the community!!

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?

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.

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

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.

Dang, darn and I'm sorry you are getting hit despite the comprehensive approach you've got going on there. Quercetin and resveratrol were two of the primary anti-histamine full monty supplements in the regimen that come to mind, I didn't see that you had incorporated. It also suggests to increase the fish oil dosage. Just listing the items from the QSG below along with the suggested dosages. Primary Antihistamine Supplements A. 1 to 2 Grams/day Turmeric (Curcumin) with Piperine B. 1 to 2 Grams/day Quercetin C. 1 to 2 Grams/day Resveratrol D. 8 Grams/day vitamin C Optional As Needed E. 2 Grams/day Omega-3 Fish Oil (EPA and DHA) F. 250 mcg/day Selenium G. 1000 mg/day N-Acetyl Cysteine (NAC) H. 5 to 10 mg/day Melatonin (Taken at bedtime) I. 200 to 500 mg/day CoQ10 J. 50 mg Zinc Picolinate* K. Diamine Oxidase (DO)** 4 mg 2 to 3 times/day with meals Have you considered putting yourself into nutritional ketosis? In terms of a dietary measure that has some reports in chronic CH albeit was a small cohort 11 of 15 got pain free, the regimen quick start guide recommends it. I take it you have the quick start guide handy, if not it is here. There may be some relevant information there (page 12 onwards describes falling from remission / non-response to regimen). Other reports of nutraceuticals include thiamine which I had seen a few reports recently on Reddit threads of people reporting success but only a single case report in literature using 750mg (tapered). There is busting... a topic well covered on the forums, if an option for you? You probably already know you've got some medication options but just putting it out there, perhaps a short steroid course would be enough to disrupt the cycle and for it not to return after the taper? This was my go to for the first couple of years with the regimen (having not stayed on maintenance thereafter all year round). Or another poster pointed out a monoclonal antibody, there's also verapamil etc. Nothing it seems works for everyone but while you are throwing everything but the kitchen sink at it already I could only but list the options... I've only been in your position once before and at a baseline 100ng/mL and getting hit with attacks. I did another 600,000iu loading dose, all of the full monty supplements (less the melatonin), did NOT do keto and found myself pain free 4 days later - I realize I am lucky. I finished the load and dropped to 20,000iu maintenance for remainder cycle, level increased to 180ng/mL, calcium was okay - understandably becomes a bit nerve racking at these levels. Pete's labs in the guide show he has been higher than this previously - obviously none of us can flat out recommend you do that. Good luck I am sorry again you find yourself in that spot. XXX isn't too frequent here these days, if you DM me I am happy to share his email address should you want to drop him a line - hint, it's also listed on the bottom of the full reference guide.

Ok so this is a few suggestions ideas, and i'm not sure exactly where this post belong so mods feel free to move it anywhere you feel fits. I am a product designer and I work also as graphic UX designer sometimes, and while using the website here I started to get a few ideas, so here it comes: - That one is an easy one: Can we implement a dark mode toggle for the website? I feel like all of us clusterheads would appreciate it greatly:) -The other idea is a tad more complex but i'm sure that there are other members that could team up with me to achieve this: a clusterbusters app! It could include different parts but basically would be a comprehensive toolbox: -one repository of treatments and resources available at hand, it could be parametric so you can basically tick your journey in treatments and whenever they match other users treatments create a node, refer to forum chats on that topic etc. -a logging app, like cluster uck, where you log and keep track of your cycles, attacks and medication protocols, the logs and time stamps can be automatically link to location in order to log atmospheric pressure, pollution, etc -the forum, an inbox, etc Its just an in between attacks idea, but please let me know if you think this is potentially interesting, I am so thankful for this community, I would love to give back to it with whatever skills and time I have. Happy holidays everyone <3

As I said in my other post, I’m pleased to have you here - whilst sorry you are in a bout, you have a good vibe that I resonate with. Yes! I have thought more than once about most of your suggestions and I love it - whether there is an out of the box solution or something custom, there is an old world charm about the forums here that I really do appreciate but understand if it was a little more in line with the times like integrated into an app it might be able to add more value, whether support, social connections, helping more people, fellowship etc. Someone from the awesome admin team might be able to give an update on any behind the scenes improvements that are in the pipeline. I’m sure I read somewhere there were some website things in the works. Good on you for offering your skills man, that’s what I just love about this community, people are too good.

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.

It's been four years and I wanted to update my log again. I have been almost entirely headache free (not just CH!) all this time. The only 2 instances where I experienced a mild CH was when I had dropped my dosage of D3 just to see what would happen. I increased the dosage again and haven't had any problems. I should mention that I'm taking 40,000 IU of D3 daily. I sometimes do a 36 hour fast and on my fasted day I don't take any supplements, but my inflammation levels are at their lowest during my fasts so I don't need them anyway.

Note: This trial is only for people who live near the Netherlands and speak Dutch. Please share it to groups and individuals who may qualify. Deelnemers gezocht: LICIT-onderzoek Kan LSD helpen tegen chronische clusterhoofdpijn? Op dit moment wordt dit onderzocht in het LICIT-onderzoek, dat plaatsvindt in het LUMC in Leiden en in het CWZ in Nijmegen! Waarom LSD? Mensen met clusterhoofdpijn geven vaak aan dat hun klachten minder heftig zijn wanneer ze een lage dosis LSD gebruiken. Dit komt ook naar voren in vragenlijst-onderzoek. Daarnaast werkt LSD op dezelfde soort receptoren in de hersenen als medicijnen zoals sumatriptan en methysergide (Deseril). Er is daarom voldoende reden om te denken dat LSD goed kan helpen tegen clusterhoofdpijn. Maar LSD is nog geen geregistreerd medicijn, daarvoor is meer onderzoek nodig. Daarom wordt onderzocht of een lage dosering LSD effectief en veilig is als behandeling tegen clusterhoofdpijn. LSD is een psychedelische stof die in hoge dosering een "trip" kan veroorzaken, maar bij deze lage dosering gaan deelnemers niet ‘trippen’. Hoe werkt het LICIT-onderzoek? We vergelijken LSD met een placebo. Een placebo is een middel zonder werkzame stof, een ‘nepmiddel’. Deelnemers worden willekeurig ingedeeld. Groep 1: Krijgt 3 weken lang elke 3 dagen een lage dosis LSD (25 microgram) Groep 2: Krijgt 3 weken lang elke 3 dagen een placebo Deelnemen? Heb jij chronische clusterhoofdpijn en wil je deelnemen aan dit onderzoek of heb je vragen hierover? Neem dan contact op: Voor deelname in het LUMC (Leiden): LICIT@lumc.nl Voor deelname in het CWZ (Nijmegen): LICIT@cwz.nl Wat zijn het LUMC en het CWZ? Het LUMC (Leids Universitair Medisch Centrum) en het CWZ (Canisius Wilhelmina Ziekenhuis) zijn ziekenhuizen die gespecialiseerd zijn clusterhoofdpijn. Arts-onderzoekers in deze ziekenhuizen werken veel samen in het onderzoek naar clusterhoofdpijn om zo de zorg rondom clusterhoofdpijn te verbeteren. Zo hebben het LUMC en het CWZ (samen met andere ziekenhuizen) een aantal jaar geleden samengewerkt aan de ICON-trial, dit was een groot onderzoek naar de effectiviteit van ONS (occipitale zenuwstimulatie) bij clusterhoofdpijn. Naar aanleiding van dit onderzoek is ONS toen beschikbaar geworden in Nederland als behandeling van medicamenteus onbehandelbare chronische clusterhoofdpijn.

It's lower than many might use yes, they are trying a lower dose that would not induce a trip and it's taken every 3 days.

One kitty is for wusses.