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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.com3 points
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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/agenda3 points
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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!3 points
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Welcome to the community @danawright65, but sorry you had the need to join us! Unfortunately, when you have to deal with getting a (correct) script from a doc, and then deal with O2 suppliers, it can be difficult!!! My solution in 2007 was the procurement of a welding ox setup.....I paid $300 for a large ( 4 ft tall by 9 in diameter) cylinder, $50 for a welding ox regulator, and $25 for a clusterO2 mask from our sister site clusterheadache dot com. And I pay $23 for a refill/exchange. Now for the drawbacks.....cylinders this size are really heavy and difficult to move around, and you can't let the welding supplier know that you intend to breathe it. Same O2....the only difference is that med ox tanks go thru a vacuum process prior to refill. Dallas Denny3 points
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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)!3 points
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I would think that it's nearly impossible to have a highly effective breathing strategy (full exhale/deep inhale) at 8 lpm. That would be because the bag on your mask doesn't fill fast enough to be full when you are ready to inhale. So it's great that that's working well now, but I think you would be able to make it a quicker abort, and maybe a longer-lasting one, with a breathing process that is supported by a higher flow rate. And I do think a strong cup of coffee will often be as effective as an energy shot or energy drink, particularly if you're not doing much caffeine at other times of the day.3 points
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Re: the caffeine - as long as you’re continuing to experience nice quick O2 aborts, no need to go there with it IMO, but when additional help is needed, here’s a decidedly strange and inexplicable thing: Those of us who have braved caffeine with our O2 for wake up attacks have pretty much universally found that somehow we can still unexpectedly go right back to sleep afterwards!!!!?? 5 hour energy type shots are popular, as they also contain plenty of taurine (which is thought by some to also be beneficial), and of course they contain just a fraction of the sweetener you'd get from an energy drink. I would hope they would also contain only a fraction of the other junk.3 points
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Greetings and sorry they are back - it sucks. My one fall from remission whilst using the D3 regimen saw me find o2 and the cluster o2 kit for the first time - I was getting o2 slap backs but as Bejeeber said that’s not bad to have several hours in between nocturnal attacks, I was aborting in 6 minutes or so and getting a slap back an hour later. An amazing advocate in our community Pete McCormick suggested to try staying on the oxygen for the same amount of time it took to abort the attack but at a lower flow rate, when I did that I found an immediate improvement back to my normal 2-3 attacks per night, aborted and back to bed in around the 15-20 minute mark which was an amazing improvement on previous abortives. I only needed the o2 setup for a total of four days before higher levels of vitamin D3 put me back into remission, thank God. Can’t add much about caffeine suffice to say some warriors use a strong black coffee rather than energy drinks and report it works, if concerned / wary about energy drinks, I know I am. I’d just straight hit up the oxygen upon waking rather than caffeine and save a strong black coffee or otherwise for shadows during the day. All that being said and in lieu of challenges obtaining Emgality, is the vitamin D3 regimen an option for you as another tool to add in the kit?3 points
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I've had a similar rebounding experience with O2 aborts of wake up attacks, and have noted others also reporting it enough that it appears commonplace to me. The rebounds can occur as frequently as every hour or so, something I'm personally familiar with. Your 3 hours between rebounds is relatively luxurious, and actually worth savoring from the perspective of some. It could be a good idea to have contingency planning for going with higher O2 flow, and having awareness of advanced breathing techniques and the incorporation of caffeine, just in case your success so far with aborting attacks at 8 liters doesn't hold (I don't wanna go all negative and alarm anyone, but sometimes the 8-10 liters doesn't hold, and beefing things up is required). Staying on the O2 longer after the attack is fully aborted might help extend the time between the wake up rebounds.3 points
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I found this yesterday, and filled out the survey.2 points
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....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 jon2 points
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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.pdf2 points
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Appreciate your feedback and thank-you for your kind words snafu!2 points
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Hi all, Didn’t want to post until I had at least 2 years no head aches. Found success with the below. Used to get headaches 2-3 times per year, lasting 7-14 days 2 attacks per day for 4 years. triggers WERE- red wine, excess sauna (dehydration) and changing time zones ie when I came home from over seas. 1) Initially micro dosed psilocybin daily then took 1grm every 1-3 months as a slightly bigger dose. Did this for a year. Helped the severity and duration. I did stop this after 1 year. 2) PROPER hydration (not just drinking more water). Added mineral supplementation for actual water absorption. *stay away from tap water*. Diatomaceous earth 2x day + Celtic sea salt (1 pinch with every single glass of water) + Irish Sea moss for minerals. We don’t get these trace minerals in our foods/ soils and definitely not our water supply any more. Plenty of coconut water too. Once consistent with this I found a massive difference. I truely believe I was chronically dehydrated. 3) Fascial manoeuvres to stretch and hydrate bodies fascia around head/ neck/ face and jaw. Check “Human garage” on YouTube or online they have some amazing routines for head aches and general wellbeing. All for free. May not work for all but for a natural, low cost and low effort routine - give it a crack !!! Wishing everyone all the very best !2 points
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Whoa, Blonde BEAUTIES , and so good for them to have been able to remain together like this!! At least one of them is clearly snuggly as hell, they're both ultra squeezable, and judging by paw sizes they'll both be a couple of HONKERS. If there is anything guaranteed to lift everyone's spirits, this is it. Hey the bad times have rolled enough, now let the good times rage! CONGRATS!!!!!!!2 points
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Most that stay on O2 after the attack is aborted find that 10 minutes seems to be the sweet spot. My advice is to experiment to find what may work for you best. My personal feeling on rebounds like this (totally unscientific, I'm not a doctor) is that either the attack wasn't fully aborted (comes back quickly) or that it's a separate attack that would have happened anyway (comes back after an hour or so). Who really knows for certain?2 points
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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, Jonathan2 points
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@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?1 point
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Well, they were probably just guessing about it being helpfull for autistic children or being a cure for homosexuality1 point
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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.1 point
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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 ?????1 point
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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.com1 point
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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.1 point
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This post might be helpful as you consider welding O2. Notes about welding O2 - ClusterBuster Files - ClusterBusters1 point
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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.1 point
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It's been over a year since my husband and I lost our fur kids (broke our hearts indeed). My husband hasent been the same evwr since. The quiet house and lack of a reason to get outside and do something other then grind away working was taking a serious toll on his heart (I wasn't quite ready) but couldn't deny his need. We found a reputable lab breeder and the rest is history Meet Neo and Aimon (brother and sister)I hope their picks bring a smile to your face. Wishing all my cluster friends are staying in the clear and excited for the holidays!1 point
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A new clinical trial in Australia has funding approved to test psilocybin as a preventive treatment for cluster headache. The PEACE Trial (Psilocybin Efficacy and Acceptability on Cluster headache Episodes), led by Faraidoon Haghdoost and supported by the The George Institute for Global Health and the University of New South Wales under the Medical Research Future Fund (MRFF), aims to evaluate whether weekly low-dose psilocybin can safely reduce the frequency or severity of cluster attacks. There is also a survey on Faraidoon's page assessing the cluster headache research gaps based on the patients perspectives. https://www.faraidoonhaghdoost.com/post/cluster-headache-trial-got-funded-in-australia https://www.georgeinstitute.org/news-and-media/news/hope-for-cluster-headache-community-as-psilocybin-trial-funded1 point
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"The pilot ‘Psilocybin Efficacy and Acceptability on Cluster Headache Episodes’ (PEACE) pilot trial will assess whether 10 mg of psilocybin once a week for four weeks compared to placebo can prevent cluster headache attacks. The study builds on early patient reports and small-scale trials that indicate its potential benefits." So that's 1g dried cubensis give or take (0.8 - 1.2g) depending potency every 7 days for 4 weeks, in sort parallels the community busting protocol. I hope they are able to recruit the numbers. I had recently read one of his articles on migraine: Migraine management: Non-pharmacological points for patients and health care professionals He is also the recipient of the 2025 Peter Goadsby Award for Best Scientific Oral Abstract presentation at the Australian and New Zealand Headache Society Annual Scientific Meeting in Sydney on 30–31 August. His presentation, “Gaps in Research and Management of Cluster Headache Through Patient Perspectives,” underscored the need to listen to patient voices and address the gaps that remain in both clinical care and research.1 point
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Two useful tools I wanted to share for anyone here who keenly follows research on cluster headaches, migraine or anything for that matter. The first is Harzing’s Publish or Perish. It is a free citation analysis program that lets you easily search scientific literature across a range of journal sources. Link: https://harzing.com/resources/publish-or-perish The second that I am really loving at the moment is Google’s NotebookLM. It allows you to upload papers, PDFs, and links, then ask structured questions and generate summaries, comparisons and notes directly from your sources. For anyone trying to understand mechanisms, track themes across papers or just stay organised while reading, it is extremely handy. Link: https://notebooklm.google Both tools make it easier for patients who like to follow the science closely to evaluate studies and stay on top of emerging research. If anyone wants a quick explanation of how to use either tool for cluster headache-related topics, I am happy to share examples. The last tool - bonus lol, I went looking for something to match CHFathers cat picture in a recent AI post - found another Google tool. An experimental tool for visual exploration: you input images for subject, scene, style and the system remixes them into new visuals - here's what I got for my new CH Forums profile pic - I am here to stay now! https://labs.google/fx/tools/whisk1 point
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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.1 point
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For an overall guide, you might look here: Basic non-busting information - ClusterBuster Files - ClusterBusters. At the end of that file is the same concise description of busting that appears under the button "New Users -- Please Read Here First" near the top of each page. ("Busting" -- using psychedelic substances to treat CH -- is the reason this site was created, but we cover everything you might need to know if busting doesn't appeal to you.) This is most definitely NOT how your life will be!! CH is manageable. Craigo has told you many of the ways (all discussed at the above link). Your overuse of the rizatriptan is understandable, but it is also almost certainly worsening your attacks and extending your cycle. OXYGEN is a necessity. (And rizatriptan is probably fifth or sixth among triptans in effectiveness for CH. I'm gonna say that by throwing meds at it and (as far as we can see from what you've said) not prescribing what works best, your doctor probably isn't great. A headache center is best if you can get to one (but many people here only see doctors now for filling the prescriptions they know they need, such as oxygen, and getting tests for the D3 regimen). Did you get relief at the ER? If so, what were you given there? A lot of people worry that they have become chronic. It's at least 90% likely that you have not. You are going to be okay. You might get the kind of fabulous preventive effects that Craigo and others (even people with chronic CH) have gotten, so that you are actually pain-free for long periods -- years, even -- but even if you aren't that successful, you will know how to manage your cycles and your attacks so they do not define your life.1 point
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Hey Erick. It's not strange at all - I get it, we get it - I actually travelled from New Zealand to Dallas this September just to meet other cluster headache patients. We hear you, we see you. Welcome and I am sorry that you find yourself in the midst of a particularly tough cycle. 1-2 a week would be nice, 3-7 a day is more in tune with my cycles which run annually Nov-Mar. I would say this isn't your life now and there are options available to you and you are in the right place to learn about those. There are 3 types of therapies for CH, abortive, bridging and preventative. For the abortive I hear your thoughts re triptans, they come with side effects, you can only use so many within a 24 period and they can cause rebound attacks. I would recommend investigating high flow oxygen via a non-rebreathable mask like the cluster o2 kit or looking into a DMT vape pen (there is a recent thread on this from one of our active members maybe worth checking out). Once you find you are able to abort effectively and quickly you'll hopefully find you get a bit less dread and anxiety for the next attack. Bridging therapies are used temporarily to offer relief whilst you wait for a preventative therapy to start working, sometimes a short tapered course of prednisone is enough to break a cycle or buy you 10-14 days pain free bliss and hopefully when you taper off, a preventative medication has started to work. You haven't mentioned what preventative meds have tried, you could share that info - perhaps we could offer our thoughts. I would just leave you with my experience being that I am now in the 10th season of successfully preventing my CH using the patient led treatment protocol the Vitamin D3 Anti-Inflammatory Regimen for Cluster Headache. If you immediately thought yeah, right - tell me another one then I'd encourage you to put that preconception to the side and just learn a little more to see if it resonates with you. It has been so effective for me I consider myself lucky but I am one of thousands since circa 2011 that has seen similar benefit. I also like that it is natural, safe (when followed as documented), accessible and affordable - I buy the supplements for less than $1 USD per day. www.vitamindregimen.com or I am sure you will find the protocol here on this site as well. There is the option of busting and I am sure others would be able to offer solid advice over and above the resources available on this amazing website. Importantly hang in there man, I hope pain free days are around the corner for you - this will pass. PFW, Craig.1 point
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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=10007213855681 point
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@ChrisZ, The CBD oils will NOT block any busting that I am aware of.1 point
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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.1 point
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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.1 point
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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.1 point
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I'm gonna fwd that to my mom. Now that she is 72 maybe she will stop offering aspirin.1 point
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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.1 point
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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.1 point
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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. MG1 point
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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.1 point
