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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.

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?

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.

@Craigo thanks to your recent YouTube video, I think my triggers right now are actually coming from my tooth. It seems the seal of my crown has failed, and sometimes there is pain there (same side as my cluster attack) and could be the trigger for this cluster period. Getting it checked out on Wednesday. Thanks for all the advice guys

Hello, has anyone here tried to treat a cluster with Pantoprazole? After a long time, I had clusters for 7 days and successfully stopped them again with pantoprazole

Ah ok, here’s hoping it yields good results!

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.

This is great! Hopefully more places follow on. Question though… is 25ug a little lower than the usual busting dose for Vit L?

to add to the great post and info. sometimes the d3 protocol doesn't fully eliminate the hits but it shortens the duration and intensity. have you noticed any of the 2 happening?

Thanks for much for the response, I will try buying a couple more of the supplements you recommended. I'm trying my hardest to not have to use medication to solve the problem. Luckily my cycle should be over in about 2 weeks if things are as consistent as usual (1 month cycle). @Craigo Regards, Darryl

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.

Have u tryed emgality? I get my cluster seasonal so when I do I used to do verapamil and oxygen but now I get my loading dose of emgality and it completely stops my cluster and I dont get them again for another year

When i start getting my clusters i start on emgality and it completly gdts rid of my cycle till the next year around the time the weather changes and i start to get them again, than i just get another emgality shot and im back to normal

Hello everyone, I've been having cluster headaches for about 2 weeks and have been following most of the advice here. Trying to stick to a low histamine diet and increased my vitamin d intake. For some back story, my typical diet consists of high histamines (avocados, bananas, kefir, and reheating left over foods). I have gotten rid of all of these at the moment during this period of attacks I just got my lab results done yesterday and my vitamin D was pretty high yet I'm still getting headaches. What else should I be doing? Right now I take vitamin C, methylated folate, fish oil, magnesium glycinate, zinc, glycine, curcumin, multi vitamin, vitamin D (around 20-30000 IU), vitamin k2, and just recently got boron Thanks for any help @xxx

I initially thought the same, but I was wrong, very wrong with my attempt to supplement estrogen. As with you, soon after starting I was under attack. I added progesterone into the mix but no improvement. As I had mentioned in my previous post, zero attacks during pregnancy for me. I even once said I might just stay pregnant forever so that I don't have Headache but life didnt play out that way. During pregnancy there are 6 main hormones in play. Estrogen, progesterone and prolactin increase and stay at higher levels until birth, hcg increases then slowly decreases, oxytocin jumps in at the end, but relaxin jumps up then levels out and gradually reduces again until birth. Now relaxin relaxes blood vessels to increase blood flow. Relaxin also increases prior to menstation to start preparing the uterus for pregnancy. Relaxin kicks in about day 14 and peaks at day 21, then drops down quickly. Now interestingly, my HA cycle always started day 22-23 and lasted two weeks which coincidentally lines up with the increase and decrease in relaxin hormone.. might be onto something here

And that was a goodie.. Post attack eye attached

Hi, I've had PH for 38 years, I've lost count of how many times I've requested oxygen. It is always denied. Up until about 3 or so years ago, there were clear pain free periods between attacks and between cycles. Now I have constant pain, always around a 2-3 level between attacks with attacks several times a day (sporadic) anything from 6-10 level and now there is no cycles, it's all the time. Example today, 1am woken with level 6, took naproxen lasted 20 minutes, went back to sleep, woken again at 3am with a 7 lasted 20 minutes, woke at 5am with another 7, took naproxen lasted about 30 minutes then no point going back to sleep as alarm went off to get up for work at 5.30am. Got to work at 7am, 8am, level 8, off to hide in the bathroom, for 15 minutes, had tried to ride it out at my desk but couldn't. 11.30am another 8, 2pm, another 7, got home at 4.30pm, 5pm rolls around and hit with a 9, more naproxen, ice pack out, off to hide in my bedroom. All the while I have a lingering low level pain between attacks. Today is the worst I've been in a while. Going to hit the indomethicin tonight at bed time. Have had verapamil in the past, did nothing. Very difficult to get anything here in New Zealand. I was misdiagnosed with CH in my teens, was only a few years back of doing my own research that I heard about indo and managed to convince my doctor to let me try it, it worked and from there rediagnosed with PH. Episodic PH has become chronic HC I'd rather try natural solutions, all these medications just make me feel rubbish on top of headaches. I like to be able to function. I've had some success with keto in the past. I only started keto again on 1st January so I'm wondering if this rough patch is just my body working out what I'm doing to it and it will settle down after a course of indo I did have a bit of a carb binge over the Christmas period so that won't have helped. 7pm and another coming on now, off to get ice and go hide out.

@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!!

@Ange72, it might be worth trying oxygen, because sometimes it works or at least helps, but as I'm sure you know, that's rare with hemicranias. Similarly, triptans rarely work, but they could be worth trying. We've had some people here with hemicranias mention getting some relief from oxygen and/or triptan injections. Busting sometimes provides some temporary relief (a day or maybe two). Your experience with indo side effects is sadly typical. Other possible treatments for PH that are typically listed are other NSAIDs (aspirin, naproxen and diclofenac); COX-2 inhibitors (celecoxib and rofecoxib); and calcium channel blockers (verapamil and flunarizine). I have read lately that vagus nerve stimulation is helping with hemocranias: one such device is the GammaCore. But really hoping the keto, and D regimen, will make a difference for you. You mention in your post that the headaches are "constant." Did you mean that you have some kind of background pain all day, with eruptions of greater pain, or did you just mean by "constant" that you have many of them every day? (I realize that I might sound here like I might be a doctor or some kind of expert. I'm just reporting what I've seen here and read.)

No I don't need to wait but results shouldn't take too long hopefully. I've never been able to get hold of oxygen unfortunately. I only have indomethicin which I only use when headaches become unbearable as it is horrible stuff. The side effects are not pleasant. In my HC the attacks only usually last 20-30 minutes with the worst of the attack being about 10-15 minutes in the middle. For that I use my icepack, pressure on certain spots on my head and deep slow breathing to relax and just breath my way through it. I've tried various different methods of aborting over the years, but nothing really reacts quickly enough. Most attacks are through the night and I'm usually slow to respond. I try to just go back to sleep hoping it won't actually come to anything. Not usually how it works out though.

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.

I don't think you need to wait for the results before starting the Vit D. You can get started now and adjust when you find out what your levels are. I would be willing to put money on that you have low D levels. What do you use for aborting your attacks? Oxygen available?

I have paraxsysmal hemicrania directly linked to hormones. Started age 15, two weeks in cycle, two weeks out. This continued until age 24 when I fell pregnant. I had zero attacks during pregnancy. Exactly 1 week after I had given birth, attacks started again, opposite side, moved from right to left. Attacks for about a year following the birth of my son became sporadic but the attacks were way more intense than I had previously experienced. I went on the depo injection, I found this stopped cycles until about a week before my next injection was due, then once I'd had my next injection the cycle would come to an end. Repeat this cycle until age 43 when GP told me I wasn't allowed depo any longer. Enter perimenopause and for the last 10 years, frequency has gradually increased to now chronic for the last 3 years or so, however attack intensity has reduced. Now post menopause and still constant but less intense attacks. I started on mht estrogen and progesterone November 2024. I had to stop after about 6 weeks as the headache intensity became severe again. Now just battling on. I have had some success with keto previously, not 100% but it definitely helped, I've just started back on keto again so we will see what happens. I have also just had my vitamin d tested, awaiting results, as I intend to start the vit d regimen to see what impact that has.

The whole article can be read here. It's darn fascinating, although the authors are clear that practical applications are likely pretty far off. Advancements-in-Intranasal-Delivery-of-Drugs-for-Cluster-Headache-Treatment-using-Cubosome-Based-Nanocarriers-A-Review.pdf There are a lot more articles about the same technology but different, non-CH, applications here: Advancements in Intranasal Delivery of Drugs for... - Google Scholar Seems to be very much an India-based thing, judging by the various authors of the papers.