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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!!

Wishing everyone a happy new year and pain free wishes to all.

Just to wish you all a happy new year, and as I always tell myself: Yesterday, the weather always will be acceptable. <3

One kitty is for wusses.

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.

Hi all. I used the search function to see if this had been shared on the forums already, I couldn't find anything. Australian headache researcher Dr Faraidoon Haghdoost has obtained funding for a clinical trial into the potential for psilocybin to prevent disabling cluster headache, funded through the Novel Treatments and Management Strategies for Chronic Pain stream of the Australian Medical Research Future Fund (MRFF). The trial is called the ‘Psilocybin Efficacy and Acceptability on Cluster Headache Episodes’ PEACE Study. Faraidoon has put a request out to any Australian Cluster Headache warriors that would be prepared to talk about their journey with the disease to help raise awareness, I quote from his recent post on Big Head Pain on Facebook. If you are a CH warrior in Australia or know someone that is whom may be willing to have a chat with Faraidoon about getting involved, please reach out to him at the links below. Seeking a Person with Cluster Headache for a Media Interview (Plus Big Publication News!) I’m excited to share that our manuscript, “Patient Perspectives on Research Gaps in Cluster Headache”, has been accepted for publication in Headache journal! This work is deeply rooted in patient experience, and we’re thrilled to see it moving into the academic and clinical space. As part of sharing this milestone, we’re organising media interviews to discuss the findings and raise awareness of cluster headache. We are looking for someone living with cluster headache in Australia who would be willing to join one of these interviews - including sharing their name, photo, and personal experience, if comfortable. Your voice could make a real difference in helping the broader community understand the condition. If you’re interested - or would like more information before deciding - please comment below or message me privately. We’d be very happy to include someone from our community in these interviews. Thank you all for your ongoing support and for continuing to strengthen this community. More about the study: https://www.georgeinstitute.org/news-and-media/news/hope-for-cluster-headache-community-as-psilocybin-trial-funded Big Head Pain Facebook group: https://www.facebook.com/groups/3085334835045020 Email: faraidoonhaghdoost@gmail.com

Bob, Gary, Matt and Anna with the TAC committee at AHS (American Headache Society)

https://youtu.be/AtoxkK7MeKc?si=vOCKVT0zIXsauhF8

I just wanted to give an update. Bob and 3 of us on the board attended. We had tons of good meetings- just the amount of respect I saw regarding Clusterbusters was huge - from pharma to headache specialists...we have an amazing reputation. Got to see and hear Dr. Schindler, Dr. Burish, Dr. Nahas, and others present. Hopefully some more promising research coming down the pipeline!

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

Do you guys say this as you slurp another piece of fermented shark from the tin? Hehe. I really love that saying though, I will remember that! Sorry to hear about your bout with pneumonia, glad you are on the mend from that - hopefully the steroids and I suspect antibiotics didn't mess you around too much. A couple of years ago I had a real bad run with a recurrent bacterial infection that used 5 rounds of antibiotics before my doctor presented a biologic which I had said absolutely not in a million years - saw a functional doc, got it under control but low and behold that was the one year I fell from cluster free remission whilst maintaining the target vitamin D3 range - opened my eyes to a few different topics including microbiome - sorry to say I don't know that the fermented shark packs a probiotic punch like kim chi though. You also mentioned in another post about foraging up there in Iceland for medicine, I suspect your varieties would be quite different to what's found in more warmer climates. It's the same in New Zealand, we have mystical magical varieties down under, one example being Psilocybe weraroa, they look like little blue testicles and pack a heck of a punch. Happy to see you here on the forums - I recently landed here earlier in the year, good bunch of folk here and we all seem to love cats. I feel like this is the more appropriate place to share recent research. So... I sign off by saying Happy new year and thank-you for the old one!

Thanks CHfather – I don’t recall Batch’s earlier advice either, likely before my time. We’re talking roughly 200–500mg calcium in a multi vitamin and most probably consume at least that daily through a standard diet. Check out this ask the Doctor post from Havard, although the patient was taking a different class of calcium channel blocker I suspect the answer would be the same. While high doses of intravenous calcium are sometimes used to reverse an overdose of a calcium-channel blocker, the 600 milligrams of calcium in your daily supplement isn't enough to interfere with the drug's ability to lower blood pressure. In fact, oral calcium supplementation has been shown to lower blood pressure slightly in some people. So you can continue to take both without risking your bones or raising your blood pressure. https://www.health.harvard.edu/blood-pressure/do-calcium-supplements-interfere-with-calcium-channel-blockers As for vitamin D3, this study by Holick and colleagues looked at supplementation with 10,000iu D3 (amongst other doses) and found no change in serum calcium (albeit an increase in 25(OH)D and decrease in PTH). You could see an increase in calcium labs maintaining 80-120ng/mL however if maintained within normal reference my understanding is that you are good. https://www.nature.com/articles/s41598-019-53864-1 You could jump on one of the Facebook or Reddit groups and ask the question there, I know a couple of chronic warriors that take both verapamil and the regimen together and are doing well. One comment about verapamil that stuck with me was that many warriors find the immediate release vs the sustained release works better for CH prophylaxis - why I am not sure but thought to add. Happy holidays all.

I found this yesterday, and filled out the survey.

....not aware if high or low estrogen is a CH trigger....my PERSONAL belief is that changes to routine or body chemistry CAN be. mayhaps a discussion with physician to ramp up the estrogen a bit more slowly. i also note that an amazingly high number of medication side effect warnings suggest the exact reason for taking the med (headache for example) as a potential side effect. a bit frightening until you consider you affecting the system or chemistry that is causing you problem. sorry if thats a little "what?...hard for me to explain things these days... best jon

Hola Luis, solo hablo un poco de español pero quiero ayudarte. Para comencar es muy importante de seguir la recomendacion del manuel. Se recomienda tomar todos los suplementos como se describe en la guía de inicio D3 Quick Start Guide - BATCH - Sept 2023.pdf

Appreciate your feedback and thank-you for your kind words snafu!

Advancements in Intranasal Delivery of Drugs for Cluster Headache Treatment using Cubosome-Based Nanocarriers: A Review Preeti Chaudhary, Kirtan Vimal Shah, Darshan Rajendra Bodas, Sanjana Prasad Deshmukh, Akash Milind Solanki Published in Research Journal of Pharmacy and Technology on December 1, 2025 Link: https://doi.org/10.52711/0974-360X.2025.00887 Abstract: Cluster headaches (CH) represent a debilitating neurological disorder characterized by severe, recurrent attacks of pain, often leading to significant impairment in quality of life. Traditional treatments often face issues like delayed onset of action, systemic side effects, and challenges in achieving optimal drug concentrations at the target site. Intranasal drug delivery has emerged as a promising alternative for the management of cluster headaches due to its potential for rapid absorption and direct access to the central nervous system. Among the novel strategies under investigation, cubosome-based nanocarriers have gained significant attention due to their unique structural properties, biocompatibility, and ability to encapsulate a wide range of therapeutic agents. This review highlights recent advancements in intranasal delivery systems, focusing on cubosome-based nanocarriers for the treatment of cluster headaches. It explores the physicochemical characteristics of cubosomes that make them ideal for intranasal administration, including their high surface area, mucoadhesive properties, and ability to enhance drug stability and bioavailability. The review also examines the potential of cubosome-encapsulated verapamil, a calcium channel blocker, as a promising candidate for rapid and effective cluster headache relief. Furthermore, it addresses the challenges and future perspectives in the development and clinical translation of cubosome-based intranasal therapies. By synthesizing current research findings, this review aims to provide insights into the potential of cubosome-based nanocarriers as a transformative approach in the treatment of cluster headaches, paving the way for more effective, patient-friendly therapeutic options.

...at one point (cannot enumerate) there was a reluctance(?) official or non by researchers to placebo arm studies with active HA patients. understandable, but obviously limiting. any thoughts? was this just an understanding or are there study protocols (besides life or death) concerning pain or perhaps intractable pain that have been superseded/modified?

@Craigo thank you for the laughs:) I can definitely use those atm! I don't touch hákarl ever tbh! it stinks more than it taste but unless it would abort CH I don't think I would eat it. And yeah somehow CH have a sneaky way of teaching you about the fragile balance within our bodies hey. Ok now I thought my mycology knowledge was rather advanced but I've never seen that NZ mushroom before! How funky! tbf i'm not too educated on non western fungi except for a few celebrities ofc. Here I pick mainly psilocybe semilanceata, it is potent indeed and quite consistent which is an advantage but definitely not as exotic as your alien testicles:) cheers mate, hear you next year!

Yea I'm sure your rt about the refined sugars but like i mention it's likely all in my head I make my own jerky so not worried about processed meats all that much but could most probably do better without the salimi and cheese. Gosh, when i think about all the things I've avoided for the simple happenstance of an attack after, it makes me feel silly (boy do i miss bacon)! Thank the man upstairs that I've never had one after going potty or my poor bladder would be in ruins lol!! Your lunch sounds good and makes me a bit hungry... Prayers for an early termination of this cycle of yours!!!

@BoscoPiko yeah I know that sugar is not really recommended for inflammatory situations, though it seems to me that it's more about refined sugars that are an issue rather than fruits, fruits contain sugar indeed but so much less than a glass of coke or something. I also tend to stay away from cheese during cycles and whatever processed meat especially smoked ones. My very late lunch today is: hard boiled egg, avocado, dried mango, green chilies and cashews:)

Hi Nikkk, Sort of the same as you. Nothing like a banger to zap your apatite away.. Lots of little bites in between the hits. Cheese cubes, almonds, salami, jerky sweet peppers and hummus etc. I tend to stay away from to much fruit because I somehow correlated sugar to an attack (most likely all in my head) no pun intended there

@CHfather thank you for your response; If I understand correctly you mean that if I take my calcium at 8am I should take the calcium blocker at 20pm?

Hi there, 10 years ago I discovered this website and made a post here after experiencing pain abortion via psilocybe semilanceata use. Back then this board helped me understand so much better how to manage my CH cycles and attacks than any doctor ever did. So just for that, thank you! As a funny story introduction, I have to tell you how I discovered the use of psychedelics for CH; After being diagnosed by a dental surgeon, I was talking about it to a friend, which told me "CH? like in Dr House episode with the mushrooms?" - this is what originally brought me to this website Now without going into every single detail of what happened to me in the last ten years, I wanted to give a brief update on my journey, as I realize that the knowledge built on this site is for a big part generated by anecdotal information, here's my humble contribution: Ten years ago I ended a cycle successfully for the first time using mushrooms. I was amazed and spent the next months reading everything I could as why this is happening. And while I dont have a real answer, my vulgar understanding is that CH are like a brain that had his road map messed with and mushrooms reset it to factory settings During that period I was trying to abort individual attacks with originally coffee, mushrooms in very small dose under my gums and tongue, and breathing exercises. However I quickly replaced coffee with lemon juice as vitamin C seems to fast track psilocybin. Anyways, after that cycle, I prevented successfully many cycles for many years using psilocybe semilanceata that I religiously pick myself every year. Meanwhile I have tried to get prescription for oxygen for years (in the fear that an attack would eventually show up) but always unsuccessfully. However, about 3 years ago a cycle started again, still not sure as why, I was traveling a lot back then and messed up my sleep cycles regularly, this could be the reason, I was also drinking alcohol more than usual, i'm still not sure what exactly happened but it did. So, I went to the doctor, reluctantly I have to say, because I still have bitter memories of what doctors made me go through prior to me discovering mushrooms for CH. Anyways, the doctor discovered that I had high blood pressure, and while he wasn't really acknowledged about cluster headaches he wanted to treat my blood pressure, which he said would likely reduce the intensity of the CH attacks too. And so he gave me isoptin (calcium blocker) and an alpha blocker, in low dosage. This did indeed greatly reduced the intensity of the attacks and fixed my blood pressure. He also prescribed me an abortive nasal spray, Imigran (sumatriptan), which I never took because I wanted to break the cycle with mushrooms anyways and i'm very sceptical by now about migraines medecines for CH. I then managed to break that cycle by doing the mushrooms protocol, took 0.5g then 5 days, 1g and 5 more days and it stopped. I went on with my life, I became a father even! 2 years went on, dosing according to the calendar and no pain. But as every father with a toddler in kindergarten, I eventually got a terrible flu, that turned into pneumonia, and therefore went to a doctor, who prescribed me steroids, which got me pretty intense.. but when I came off the steroids, omg.. the CH came in raging like I forgot how terrible these could get! 3 to 5 attacks per day and brutal and long ones! my partner couldn't stand seeing me that way and called my doctor and went on to give me the imigran nasal spray; in the midst of an awful attack I took the spray and within 20min it stopped. I was relieved. So after that I was taking a spray if the attack was getting out of control.. well.. little did I know, the attacks were coming in even more regularly and stronger than ever (if it's possible at this point..) One night I had an attack that just wouldn't stop and my partner called an ambulance to beg for oxygen, but I was too far gone and they probably didn't give me the oxygen like I need it, it was a nightmare, I ended up in the hospital hallway strapped on a bed begging to be killed and screaming at them that they better not give me opioids (because i had previous horrible experience with those before and they do nothing good to me). I eventually made it back home, absolutely beat. During a short period pain free I went online and looked up imigran and CH etc, and realized that it was a terrible mistake. So I decided not to take it anymore and rather either raw dog the attacks or bust them with mushrooms. And here we are today, no imigran for a week and two doses of mushrooms in, I had one strong shadow this morning, no attack yesterday, I am not holding my breath but it feels like I might be close to break the cycle! That's my update, hope it is useful to some. Oh btw, I just read recently about using DMT vape as an abortive and it seems insanely efficient! i'm currently looking into getting the mimosas bark to make my own. If any of you have info on this I am very interested! Thank you all for contributing to make our lives better, stay away from sumatriptan, stay away from steroids, I wish you only the very best <3 Edit: I just realize that this could be more appropriate in the busting stories section, so if a mod would move this there it would be probably good. I don't personally care that this is public however.

Well, they were probably just guessing about it being helpfull for autistic children or being a cure for homosexuality

The range for normal depends on the country and the lab. Quest offers a range of 30-100ng/mL however the specific regimen you may read about here and on other platforms for CH prophylaxis targets a vitamin D blood level of 80-100ng/mL for episodic, the upper limit for Quests range for normal and slightly above that for chronic CH. Enjoy the watch and hopefully a pain free holidays ahead.

Update. 3 days ago I started a small amount of topical estrogen replacement and today have had a CH attack. It was a minor one but definitely the kind of thing I would experience at the start of a cycle. Yet Google tells me the opposite should be true, that CH are more likely with low estrogen levels ?????

Hi all. Here is a 10 minute explainer video utilizing AI to generate some pixar characters of myself and Pete Batcheller to offer an introduction and "flight briefing" of the Vitamin D Regimen, a patient led preventative treatment protocol for Cluster Headache. For more information on the regimen I know there is plenty on information in the forums here and the guides, interviews and other Vitamin D videos can be found over at www.vitamindregimen.com

Many thanks!!!

i get the thought behind this and commend you for your efforts with taking over the reigns with the vitamin d3 protocol and education about it. But this AI slop is garbage and unwatchable,imho.

Clusterbusters Executive Director and some board members will be in Scottsdale, Arizona this week. First a CHAMP Coalition meeting and then the American Headache Society Meeting- many of our favorite clinicians will be speaking! Looking forward to hearing updates and getting more ideas of ways to help our community. https://headachemigraine.org/coalition/ https://americanheadachesociety.org/events/2025-scottsdale-headache-symposium/agenda

That’s interesting I will watch that. I did test my vitamin levels during a cycle to see if I was deficient in anything but everything was at normal levels.

Thank you Jeeb! Holy cow, yes they both came with clob hoppers for feet.. .....enormous! I'm pretty sure we just brought to future whales into our home They have filled our house with all the things that have been missing (and then some)!

Last autumn/winter we ran a survey to gather data on human suffering from a range of conditions and experiences, and you were kind enough to participate by reflecting on your own suffering and providing responses, for which we are grateful. Some of you gave detailed descriptions, all of which were read. We have now finished analysing the data and have written it up in a new post on the Effective Altruism Forum, which you can find here: https://forum.effectivealtruism.org/posts/hTGScBoBDKwmAcGP6/how-to-quantify-global-human-suffering-results-from-opis-s We included some of the text descriptions, which convey a sense of what some of the suffering is like, beyond the numbers. Of course there was no identifying information disclosed. We plan to submit a reworked version to an academic journal, making the case for suffering metrics and for a larger survey that builds on what we learned from this first one. Our goal is for the prevention and alleviation of suffering, and especially severe and extreme suffering, to become a top priority of our governments at all levels. If you’re interested, you can also have a look at our recently published Compassionate Governance: A Strategic Guide to Preventing and Alleviating Global Suffering. Many thanks again, and wishing you to be free of suffering, Jonathan

Hi Nut cluster. I’m clearly not female (I missed the social cues upon joining the forum regarding using a cat as my profile picture), I don’t have much to add regarding estrogen but I have always been intrigued with vitamin D biology during pregnancy and your post captured my interest so please excuse me if this is a little off topic but wanted to share. Cholecalciferol / vitamin D3 is converted via hydroxylation into the blood storage form calcifediol which is then further converted into its hormonal form, calcitriol, mostly (but not exclusively) by the kidneys. The blood level of calcitriol is maintained in a strict range to maintain calcium homeostasis and is regulated by parathyroid hormone. During pregnancy the levels of calcitriol, the hormonal form, increases by double or triple to levels you’d see in granulomatous disease or intoxication but without hypercalcemia. The body deliberately raises both calcitriol and binding proteins in order to support placental development, immuno-regulation and fetal skeletal growth. The levels then fall back into normal range 2-6 weeks postpartum. There is still much we don’t understand about this intriguing process. It’s interesting that many female warriors report skipping cycles during pregnancy and to also consider why they return postpartum (and perhaps also why MS relapse may occur postpartum), and although tempting to speculate it may have something to do with the increase in calcitriol and its immuno-modulatory properties, probably an oversimplification - the body is just so complex. Dr. Hollis & Dr. Wagner have a combined century or so of research looking at vitamin D and reproductive outcomes, this was a great talk from last year although can’t recall if they cover the specifics of the points above.

We had Dr. Rev. Tammy Isaac come to our conference this year. I reached out given November is Family Caregiver Month and she sent me these resources and she will create some NEW content for us next week! I'll try to remember to add them to the thread when they go live. Our Care Partners are so important! We want you to know how much we care and appreciate you - and remember...you can experience grief in this process too. We have Care Partner groups and programs! ⁠ ⁠ Below are some resources from our amazing friend Dr. Rev. Tammy Isaac. Those who were at the conference heard her speak, she has some resources I'd like to share. Please take a moment for you to read/listen to these- and know how much gratitude we have for you.⁠ ⁠ Blog Post: Carrying Love, Carrying Loss: The Caregiver’s Journey⁠ https://www.breathegriefcounselingcenter.com/post/carrying-love-carrying-loss-the-caregiver-s-journey⁠ ⁠ Permission to Breathe Podcast Episode: Caregiver Grief: Loving Through Loss Before Goodbye⁠ ⁠ Spotify: https://open.spotify.com/episode/5nqQFAs5Xre7m0HF5LJkGE?si=4iaIx_lYTiW6sU9Psrxnrw⁠ ⁠ Apple Podcast: https://podcasts.apple.com/us/podcast/caregiver-grief-loving-through-loss-before-goodbye/id1767836754?i=1000721385568

@ChrisZ, The CBD oils will NOT block any busting that I am aware of.

Goadsby led the gold-standard clinical trial of oxygen, for which we can all be grateful, and he seems to be a leader in pharmaceutical treatments for CH, but he indeed has been hostile to busting. It will be nice when clinical studies prove him wrong.

This has been my go to since my first cluster 10 years ago. I start with a cold pack or cold wet wash cloth to my face or head and then usually end up in a hot shower. It works more than half the time although I have had nights where I have had 3+ showers before morning and have even fallen asleep in the tub as the pain receeded. It's usually my last resort as actually getting myself in the shower after the pain starts isn't easy.

I will get in the shower, sit on the floor and keep turning up the heat everytime I get accustomed to it, sitting it covers my whole head and shoulders and I get it to nearly blister heat and it can help a lot, never abort but cut the sharp corners off. I know I have read on here others who use hot showers or baths to help them as well.

I'm gonna fwd that to my mom. Now that she is 72 maybe she will stop offering aspirin.

Angela Stanton is neither a medical doctor nor offers safe medical advice. We do not recommend you follow her protocol or join her cult.

I have looked into that condition MG a little, even before coming here. I show less signs of that being the case, my skin isn't extremely sensitive in that area like it is for those sufferers. My jaw aches but that is more like a warning sign something is about to happen in my entire left-head. The actual pain I feel is hard to place because it is so, just, ridiculous. Tonight was worse. I got to work at 7pm and I was having full blown attacks from then until about 1130pm. There were times I was sobbing. I mean... I'm a guy, and not just any guy, I'm like 6'3" and built like a football player, I'm a big dude. I also kind of have a stern demeanor, and, it's just weird. My co-workers are being nice to me at least, I've had a kind of rough year this 2015. And again, during the pain tonight, I was just almost twitchy antsy, moving my chair around, rocking my body, rubbing my head against my arm and in the nook of my arm and clenching my fist. Pacing around semi helped. I am planning on seeing a doc soon MG. I'm getting through tonight at work. Tomorrow is Sunday so a doctor might be hard to find. I'm worried about the drugs they will want to give me though. I've read bad stuff about some of the shots and what it does to your heart. Besides, I may or may not have, uh, known about psilocybin for years now. If that's the cure then that's really no problem. It's 3:45am where I'm at, and my jaw got kinda achy around 1:15 but nothing happened. It's weird, these waves of headaches seem to be on a very tight 22hr cycle at the moment. Maybe not. Sorry for all the walls of text. I'm honestly kind of scared right now. 5 days ago I didn't show a bunch of symptoms for something nicknamed "suicide headache" and now, out of freaking nowhere, I do. At least they are just symptoms for now.

Amphs, I can't say for sure that you have CH (it doesn't really sound like it to me, but I'm not a doctor). Moxie has given you a lot of great information. Time for you to get to a headache center (regular doctors are almost certain to be useless, and even neurologists are generally not very good at unusual head pain -- but since headache centers usually have long wait times, start where you can). As Moxie said, you might try drinking down an energy shot (5 Hour Energy, etc.) or energy drink (RedBull, Monster, etc.) at the first sign that the pain is coming on. This does help a lot of people with CH, and I'm just figuring that it won't do you any harm to try. Hard to know what else to suggest. As Moxie also says, an indomethacin prescription can pretty quickly rule in some things and rule out others. I hope others will have something more useful for you. Very, very sorry for the way you're suffering right now.

Hi Brett, A change in cluster patterns is usually a sign that the busting is working, or at least doing something. Yes, they can come faster and harder, but will eventually break. I never know which side of my head the next attack will be on. I get more on the right side than the left, but the left are MUCH more painful. I've had the odd one or two on both sides at the same time and occasionally they'll swap sides during an attack. Or perhaps it is two attacks back-to-back on opposite sides. Hard to tell. The only rule with clusters is that no two people have them the same and just as soon as you figure yours out, it changes. A changing pattern is part and parcel with cluster attacks, even if it takes 10 or 15 years, they will eventually change in some way. I am one of those people who like to chop and change busting meds. After busting regularly with shrooms for months, I'll switch to seeds for awhile, then back again. I've learned that my body quickly adapts to any medicine it is on, so changing often is good. Although people here can give you advice based upon their own experience, and a list of things to try (Oxygen, sumatriptan, energy drinks, coffee, Vitamin D3, etc.), we have all entered a realm where we are our own doctors and chemists, and probably know more than the doctors we go to see about this condition. As such, it's hard to say what will work for you. There are no charts that says if you are this or that gender and this body weight you should take x grams of mushrooms or so many RC Seeds. We know rough ranges that most people find affective, and the ranges where people experience a minimal trip - most people that is. My advice. Try everything. Start with very small doses and work up. Find your comfort level, find what seems to have an impact against the beast and stick with it for a period of time. And most of all, document all attacks and meds taken. It will help you find a pattern that works, and to help know if you are having an impact on the pattern. MG

I got the stronge sense of morphed cluster headaches when I read Echo's post for the first time, been through that myself. I was medicated for roughly 20 years each year medications either raised or added. First years: Episodic, around 50 hits annually. Able to function at least some level during attacks, except the most severe ones, overal attack duration from 30mins to 1 hours, 1½ hours max. Cycles lasted for weeks, most attacks during sleep. 10 years later: Episodic, around 300-500 hits annually. Unable to function at any level during attacks, the pain volume much greater, duration from 1 hour to 3 hours (max). Cycles lasted for months, daily and nighttime hits equally. 20 years later: Chronic , around 1500 hits annually. Attack severity reached maximum that I have ever experienced, during hits unable to even move my limbs, lying on the floor until losing consciousness. Overall attack duration 2-4 hours, 5 hours maximum. Hits had lost all the regular schedule they had when CH began, I could be hit anytime, anyhow. My morphed CH could not have been possible without ridicilously dangerous continuous prescription medication. Ever since got rid off them, first experienced the longest pain free stretch I have ever had (with busting) and now CH is very, very slowly, day by day, going back to it's "original form". I'm thinking it could be something else but could very well be just medication morphed clusters.