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Stopping by to acknowledge all of those who suffer with cluster headache. Your bravery and hope is inspiring to me as Joe and I advocate for better psychedelic legislation in New York. Don't forget to spread awareness about cluster headache today and every day.

Hey ya'll!! Just wanted to introduce @CraigStewartto anyone who might not know him on Facebook. He's from NZ and has the coolest accent! Lol! I had the pleasure of mentoring Craig with some long distance cultivation tips and busting info a few years back....he also embraced the D3 regimen which worked extremely well for him!! He's become quite the D3 advocate and Guru in the Facebook clusterhead communities, including putting up some really good YouTube videos including an interview with Batch @xxx Welcome to the nuthouse mate!!

@Royster, I had a chat with Lady Ainslie Course, our clusterbusters vice president, who will be your host at the conference....she's fairly certain that our founder, Bob Wold, will be bringing some Clustero2kits.....send me a pm with your name and she said she would try to put one back for you!!

I tried it here before posting it up just to be sure it would work like I expected. I have no way to measure the end flow rate, but you can rest assured it will make a very noticeable difference in what you get at your mask. My subjective observation is that it seemed to be at least 25lpm. A quality mask will make a large difference in your abort times as well.

Wishing great Awareness day to everyone Still refusing to call it a headache in Finland https://www.facebook.com/hortonassociation

Welcome to the club xlsrd. Hang around this place has helped me tremendously. I've got up to 3 yrs pain free with the knowledge from here. Not cured but found peace and hope.

Thanks so much @Bejeeber That's a familiar nuisance ! I see a lots of interesting articles on the web on your side of the world, but nowadays can't often access them

I like it. That video link to Baba O'Riley isn't working for me (and maybe others in US), so here's one that might work better for those stateside:

Eileen and Joe: Big appreciation for the advocacy for better psychedelic legislation, and the potential positive impact for those of us with this currently misleadingly named condition. @Tony Only, you'll definitely never catch me referring to a cluster attack as a 'headache'. Maybe we should consider adopting Finland's Horton thing over here. As long as it doesn't get confused with a popular and delightful Dr. Seuss character.

Article in swedish: https://www.hjarnfonden.se/2023/03/varldens-forsta-centrum-for-klusterhuvudvark-oppnat-pa-karolinska-institutet/ And a Google translate: The world's first center for cluster headaches opened at Karolinska Institutet Cluster headache (Horton's headache) is the most painful headache there is and is sometimes called a suicide headache. Now the world's first research center completely specialized in cluster headaches has been started at the Karolinska Institutet in Solna. The center has been made possible thanks to support from Hjärnfonden and a large donation from philanthropist Rune Andersson and his foundation Mellby Gård. On February 3, the world's first center for research on cluster headaches was inaugurated at Karolinska Institutet in Solna. The coordinator of the center is Andrea Carmine Belin, associate professor and research group leader, who for many years has received support for her research from the Brain Foundation. She is the spider in the web and the one who decides which projects should be pursued. - We needed to create a center for research on cluster headaches in order to gather all the expertise at Karolinska Institutet, start new collaborations and to make the disease visible, she says. At the new center, research and clinical activities can collaborate with the goal of better understanding the mechanisms behind the disease in order to be able to make a diagnosis earlier and develop better treatments or even a cure. - The fact that the center is right next to clinical operations that treat patients with cluster headaches and migraines means that we can easily test what we come up with, new treatments and other things, directly on the patients, says Andrea Carmine Belin. Donation of 34.3 million made the center possible The new center has been made possible through a donation of SEK 34.3 million by business leader and philanthropist Rune Andersson through his foundation Mellby Gård. The support is divided over seven years, which guarantees a long-term perspective and continuity in the research. Gilberto Fisone is a professor of neuroscience and has been involved in the project to set up the cluster headache center from the beginning. In addition to being on the board, he is head of the department of neuroscience and sits on the Brain Foundation's scientific committee. - It all started with the support that Andrea Carmine Belin's research received for many years from the Brain Foundation. The opportunity to build this center for cluster headache research was already created there. At an earlier stage, a donor in the form of the philanthropist and business leader Rune Andersson and his foundation Mellby Gård came in via Hjärnfonden's Donor Program and supported the research that Andrea was conducting, he says. At Karolinska Institutet, the conditions for creating a center have existed for a while with modern research environments and a well-developed contact with care. But above all because of the completely unique biobank with biological samples and clinical information from patients diagnosed with cluster headaches. - The biobank is the world's largest and it is the entire core of our research. With it as a base, we can do both biological and epidemiological survey studies. We continue to build it all the time, says Andrea proudly. What has been missing for a research center to become a reality has been funding. Therefore, Rune Andersson's donation of SEK 34.3 million was absolutely decisive. - Rune Andersson's contribution is extremely important, above all because it is long-term support, says Andrea. We have received funding to run the center for seven years and this investment will be able to lift our research even further and bring us closer to the goal of finding a solution to this disease mystery. What does the Hjärnfonden's support mean for the centre? - The brain fund has meant an enormous amount to me and the research I conduct, says Andrea. I received my first scholarship as a newly awarded researcher from Hjärnfonden and it enabled me to continue on this path. Getting support early in the career is extremely crucial for many researchers, in order to be able to continue at all. If the Brain Foundation had not supported my research from the very beginning, we would not have a cluster headache center today. What projects do you have going on right now? - Heredity is our greatest interest. Between 11 and 20 percent of cluster headache sufferers have a close relative with the disorder. We look at some different genes, if you have certain types of deviations in them, it means a greater risk of getting the disease. Circadian rhythm is also important as we know that nocturnal attacks of cluster headaches are common. That's why we follow patients' sleep patterns closely. We are also very interested in gender differences and have seen that women suffer more from the chronic variant of cluster headache while men more often get the episodic variant. The result can be of great importance for how and when a diagnosis is made and what treatment the patient receives. How was the inauguration of the new center? - Very funny! It was a good opportunity to invite those who supported our research, collaboration partners and the rector of Karolinska Institutet. The support from the private sector is incredibly important for our research to continue, says Andrea Carmine Belin. What does the center mean for KI and your institution? - It is very important for both the department, for Karolinska Institutet and for research into cluster headaches. There is no other center in the world that is focused on cluster headaches. This puts the diagnosis on the map internationally, says Gilberto Fisone. The fact that the support to the center is also long-term, that it will be implemented over seven years, gives us opportunities to coordinate the research better and gives room for new ideas and to test new angles. It is unusual for medical research in such a specific field to have the opportunity for such continuity at all.

Royster, the redneck bag is great to get the O2 supply up to where you need it. One word of caution is do not advance set up the bags of O2. I have built many of them myself and was cautioned by Racer1_NC not to leave them lying around due to the possibility of an explosion: based on the possible leak of O2 that would raise the ambient O2 to a dangerous level. So, I would start filling a bag with O2 when I was downing my coffee. That gave the slow regulator time to start filling the bag so that I had plenty for each inhale. Then, when I was doing my 'post breathing', I would turn off the regulator and pull down the contents of the bag by breathing it. That keeps the environment safe. Storing the O2 in the bags is a bad idea. I strongly suggest that you do the same! The bin bag is not going to contain the O2 for a long time without it escaping into the atmosphere. That plastic is permeable. BE careful! So, suck it down and leave it empty until you have a hit to deal with. In your situation, I would leave the bag on between hits to save time and tubing. If you make the tube long, then you have plenty of room to pace. I don't recall reading if you are doing 'post breathing' or not? That is when you stay on the O2 and breathe normally when the pain is gone for another 5 minutes. The 'Y' connector that Racer showed you is a brilliant idea! That should offer a much better chance of killing a hit. So hang onto doing Post Breathing!! Additionally, many find that keeping some cold caffeine at the ready is a huge help. I do! Iced coffee in the fridge, as well as V8 Energy. Most find that cold is the best when hitting the caffeine. Some will take an ice cube and put it on the CH side, holding it on the palate as it melts. A bit less dramatic than your bucket dunk. BTW: When do you prep that bucket of ice? When the hit is starting? I would expect that you would do better to spend your ramp-up time huffing O2 as opposed to doing anything else! Thye faster you hit the O2, the better your chance of killing the hit. If you know when your first hit will come, then you can take evasive measures by downing some caffeine before the hit is expected. That can, at times, eliminate the first hit. One aborted before it starts is always a bonus! You can also put your feet or lower body into a shallow bath with very hot water. Add more hot water as you adjust to it or it cools down. Perhaps place some ice on your head. I use a cool washcloth as the 'cold' of ice is too much of a shock to my system, but others swear by it. The idea is to open the blood vessels of your lower body and reduce blood in the upper parts - mainly your head. Questions: Has O2 ever worked for you? Have you had an MRI of your noggin in the last 5 years? How does it feel to have a CH in the center of your head? When does it side-switch during a hit? That part of your description has me baffled. Yes, some do side switch during a cycle. Some have one cycle on one side and then another on the opposite side. But what you describe is different.

Yes there health and safety gone mad over here, and probably withdraw my prescription, do you reckon I could get 2 on the go though and bring it up to 30 ltrs with the y tubing??

Now that thing is a new one to me....just a wild guess would be a very over engineered built in regulator. Ainsley could answer if DJ is sending any masks over for the UK conference. If nothing has been arranged, I would be glad to bring a few over if a need exists. Knowing that any built-in regulator I've seen from the UK has a 15lpm max flow, I've sourced some "Y" connectors and some short tubing for a work around for those that want a higher flow than 15lpm. If one has access to more than one tank it will increase flow to your mask. Referencing the picture below, you'll find it's rather simple. Hook to both tanks and regulate the flow as needed. I plan to bring some of these to the UK, but the\ parts are available on Amazon for a few bucks.

I get it! Distractions are welcomed in the CH world but I'm a sissy when it comes to molten lava coffee (the kind that leaves your taste buds dead anyway)

@Roysterin my experience over the years, they will be available soon...usually not out of stock for long albeit they are quite expensive when going to other countries but even at $75, it would be worth it for me....been using them for close to 15 years...just retired my 1st a couple years ago!! The best feature for me is it comes with a mouthpiece....having anything touch my face during a hit just adds to the pain but the mouthpiece works great! One tip about O2 efficacy.....myself, Spiny and many others have found that incorporating caffeine into the mix enhances the efficacy of O2...I keep cup in the microwave, nuke it as soon as a hit starts, get on the O2 for a min then sip coffee and blow the steam on my affected eye for 30 secs and back on the O2....that coupled with years of busting have resulted in my being able to dispatch the vast majority of my hits to 5 min when a cycle does break thru! DD

A description of hyperventilation from an O2 expert (the ex fighter pilot you mention in another post, who is indeed a hero in this battle) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ In essence, it's fast, deep inhales and exhales (each inhale/exhale taking three seconds). The recommended process in the file is 10 3-second inhale/exhales (30 seconds total) of room air, with a forceful "crunch" of the abdominal muscles at each exhale. The author of the file writes, "The exhale part of this procedure is important. Exhale rapidly until it feels like your lungs are empty... They're not. At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion." After the 30 seconds of hyperventilation with room air, take a deep inhale of O2. Hold the O2 for 30 seconds, exhale forcibly, and do another 30-second cycle of 10 inhales/exhales. You should read the file so you fully recognize what's going on there. Are you able to post a photo of your mask? It has a bag that fills up with O2 before you inhale? It has two circles of holes, one or both of which have a white or green gasket on the inside of the mask, but the other is just open holes? (One thing you can do that might help a little is to cover those open holes with tape or with your thumb, because they let room air mix with the O2 you are inhaling.) Your O2 is in a canister/tank/cylinder? So glad you're going to the conference! Wish it was sooner. Have you tried any other strategies to manage the pain of your attacks? Can't even imagine having it on both sides. Some people find that standing in very hot water helps, with some variations from there (for example, some walk out into a cold room and the back into the tub, some get more immersed than just standing, some simultaneously put an ice pack on the head).

Woo not me I take the pain of the hot coffee as a great distraction.

15 LPM's can be insufficient for some but generally decent if you are not outrunning the bag on your non rebreather. Hyperventilating is just one method amongst many so don't get caught up on one method. Try many.. deep and hold, short, quick and hold, etc. I also experience better success at lower thresholds of pain/intensity. That's not to say that you can't abort a thunder striker. Caffeine is a helpful tool however at a scorching temp you are setting yourself back in the abort process with the inability to get the caffeine into your system quick . Try making strong coffee and placing in the fridge so that it's cool enough to down and get back to the 02. The trifecta experience you have with left, rt and center is rare but not impossible. As far as what hyperventilating is ...think of the kid with the brown paper bag breathing as fast and hard as he can until on the verge of passing out or puking. (Not suggesting that you do this but trying to paint a pick). Sorry you are battling the cluster bunny but hopeful you can slay him..

Thank you, Vajenna, yes I've tried all them techniques you mention and I can't fiddle about with my cylinder what so ever if I did it would probably blow my house up lol. I've seen these valves where you can up the Ltrs p. minute but look nothing like the one I have everything seems welded together. And once it peaks, there's no chance of me staying on it as I'm all over the place, banging, slamming, rocking, crawling, dunking my head in ice bucket. I'm like a possessed demon screaming and crying. I'm attending the Glasgow conference in 6 weeks I'm sure I'll get so much information and knowledge there. I'm new to this site and its been a god send I've learned more in 1 week than I have from all off my health care professionals. I wish you and all other sufferers well on our independent journeys to find what works for us all.

Do you drink caffeine at the same time? I find oxygen works best with an energy drink or I prefer a screaming hot cup of strong coffee. I also use a 15 lpm regulator. I have one that goes to 25, I bought it on Amazon and you might be able to do the same (I’m in the US so not sure on this). I personally am afraid to use it because my oxygen company was very clear about not using anything except what they give me and if they ever found out and I lost the tank I would be in shambles. I find I have to stand to get the oxygen to work well. Deep breathing using my diaphragm to empty the entire bags worth of o2 deep into my lungs and then slowly exhale trying to match the speed of the bag refilling. And at the end I lean/crunch forward to try and push as much air out of my lungs as possible. This is what I finds works for me. Hopefully someone on here will chime in and link the video because I do believe there is a video somewhere of a breathing technique. Also time is of the essence. I can almost never get rid of one past a certain point either.