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The Horton conference 2025 organized by the Finnish Horton Association brings together professionals in medicine and pain management and - most importantly - peer support. As a welcome continuation of last year's event, the association is organizing the Horton Conference, this time on September 12–14, 2025 at Hotel Sorsanpesä in Seinäjoki. Due to the wishes of the participants, we are now expanding the event to a full weekend. The event's own website is at https://tapahtuma.hortonyhdistys.fi and tickets can be bought via the site. Our event brings together people with Horton's neuralgia, their loved ones and experts in the field to share information, experiences and peer support. The goal of the weekend is to provide participants with up-to-date information, practical tips for everyday life, and strength and hope through community. The event offers a unique opportunity to directly meet patients and their loved ones and network with other experts. People with Horton's neuralgia have to fight against the most severe pain a person can experience. The more severe the form of the disease, the greater the impact it has on all aspects of life. Pain manifests itself in attacks and these attacks are repeated, this brings fear as one component and leads to traumatization before long. Those who have been ill for a long time may be suicidal and, for example, post-traumatic stress disorder is fairly common among them. Getting control of the disease and the feeling of control experienced by the person are usually some kind of turning point for the better. This is not always achieved, because a proper, effective and safe treatment has not yet been developed for a fairly rare disease. The event can also be found on Facebook. Come join us and become empowered!

Hello my fellow clusterheads! It has been quite a while since I last posted on here. I don't login in regularly unless I'm in a cycle and need the additional support and information and encouragement. Thankfully, I've been relatively cluster free for about a year now! I just wanted to share a few things that's happened as of late: 1. Emgality: I'm sure it doesn't work for everyone, but Emgality has been VERY successful for me. I begin taking once a month shots as soon as I go into a cycle and I'll maintain the routine until the clusters stop. What used to be 4-5 attacks a day(at it's peak), on Emgality they've reduced to maybe 1-2 a day at peak. While still unbearably painful, the reduction in frequency is a joyous thing! 2: I began having clusters while I was still in the military(honestly didn't know they were clusters until later... Didn't even know what clusters were then). I may get some rebuttal for saying this, but this is simply my experience. I suffered a head injury in the military and the clusters began almost immediately after that. Perhaps there's a link between clusters and head injuries, or perhaps it was simply coincidence. Either way, that's how it went down. For anyone in the military that began having clusters while in, and you have it documented, I was awarded VA disability for my clusters. IT IS POSSIBLE!! The following was the verbiage used in the final decision "Service connection for cluster chronic headaches as secondary to the service-connected disability of insomnia with traumatic brain injury". The reason I let my military brothers and sisters know this is because I know treatment can be expensive (oxygen, emgality). This now being a VA disability rated concern, I can now see the VA for clusters specifically and I can get treatment through the VA. Anyways, I hope this information helps someone. Keep fighting the good fight and know that you're not alone! Reach out to me any time if you have questions.

...my favorite O2 shop tech gave me a bag of these and said "don't be afraid to change frequently, you don't want failure at the worst possible time". same dude "loaned" me (wink wink) an m60 tank reg (different than e-tank) which i still have..."return when you don't need anymore" he said. for a clusterhead that meant never. also have several spare e-tank regs bought from Amazon...Medline i think...never had a single problem. ALWAYS have a spare...it's really cheap insurance that you won't need until you REALLY do.

I think we all just learn to deal with it and take it as it comes. Not like we can really do much to avoid a hit, they come when they want to and hit as hard as they want to. Some have had success with busting other not so much. Sometimes it brings the pain down, makes it go away for a period of time or does nothing at all. No rhyme or reason that we know of. Just when you think you have it tamed things change and we blame it on the weather, moon or life event. I truly believe that we were all just picked to have clusters because we can deal with it like no others can. We are all the lucky ones that can honestly say they have a high threshold for pain and back it up by the countless hours we spend every week, month or year banging out head into our hands, walls floors or anything else that looks fun to take your mind off the devil inside you trying to escape. It is what it is but we are all lucky to have this site to get it out in the open with others that understand it. Just do your best and keep moving forward in hopes that someday we will have a cure for this infliction.

Got a really understanding employer, I drive a coach for a living all over Europe, but when in cycle, I work local and have days off when needed,

As much as I appreciate your using the word "silly" when perhaps you were tempted to use something stronger, I'm gonna say that the trials you describe are not persuasive that oxygen won't work for you. Emergency rooms almost always use flow-rate settings that are considerably below optimal, and the same is true of the regulators that are provided by oxygen suppliers. It is also not unheard of for ERs to use a standard mask instead of a nonrebreather, or for suppliers to send the wrong mask (or cannula). (And no ER uses, and no supplier provides, the "ClusterO2 Kit," the mask specifically designed for people with CH.) My daughter who has CH was convinced that oxygen didn't work for her until we set up an optimized system. Now she aborts all but the very worst with O2 in well under ten minutes and describes O2, as many do, as a "lifesaver." So maybe my "95 percent" claim was unduly weighted by her experience, but I will say that a large number of people who have been at this board saying O2 didn't work for them were surprised when it turned out that it did when they had an optimized system.

For our uses, I like the low cost of the Amazon units. If anyone asks, this is what I recommend. Now if I were an EMT, would I want to carry one on the truck? Probably not, but for our use I think they are fine. The low price gets someone with limited resources a 25LPM regulator for minimal outlay. I have a WT Farley too. Great, well-made unit with a 40LPM option but they cost a bit more. The only regulator I've had trouble with was a one I purchased on eBay.....the yoke bent after a few years of use and wouldn't stay sealed to the tank outlet. I robbed a couple parts off it and in the trash it went. I figure I got more than 20 bucks worth of use out of it. With any regulator, keep spare seals around. You'll need them eventually.

Care Partner Perspective Perspective matters and this year we are honored to have the daughter of someone who experiences cluster headache to give their picture of this disease. Anna's mom has cluster headache and it has shaped her educational path. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

...the first question i'd ask is: what funding? cancer research, among others, has already been cut. we have never experienced funding for CH anything besides minimal...now?

You could try some ice packs for the swelling. The ice might help to numb the pain a bit as well. The PTSD/Anxiety is a beach! I struggle with it all the time even when I'm in the clear. The one thing that I have found that helps is exercise and staying busy. I know some can't exercise without worry of an attack while others will use it as an abort. Ever since I was able to get a break from a particularly looong attack by jumping on the treadmill, it's been something that I do when I have bad shadows. Sorry I've not got much to help on this one. I hope your head clears up soon!!!

Dr. Shuhan Zhu is a neurologist with a subspeciality in headache disorders. She works at at BWH/Faulkner Headache Center where she sees patients with migraine, cluster and other disorders including CSF volume related disorders. Challenges in Diagnosis of Cluster Headache How does a doctor handle diagnosis when the path isn’t clear? Dr. Zhu found a case that confounded her for 6 months. She will go through the steps she went through to help get an accurate diagnosis for her patient. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

Counting down to the conference- I'll add speaker highlights to this thread. Patient Advocate, Craig Stewart will be flying all the way from New Zealand to join us! He has studied and become a resource for the community on not only the D3 regimen but in understanding nutritional impacts as well. The goals of his talk will be: A comprehensive guide to the Vitamin D3: Anti-Inflammatory Regimen, including what it is, how to start, loading dose protocols, safety considerations, and real-world efficacy. He will also explore the growing body of research connecting Vitamin D, nutrition, and the gut microbiome in migraine, while highlighting how this emerging field may eventually shape our understanding of cluster headache as well. His presentation is set for Friday after lunch at 1:30pm CT Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

Hi Everyone I found an amazing source of medical Oxygen in small and extra large tanks in the Austin Texas area for Cluster Headache treatment. Company name is Texas Welding Supply, don’t be deceived by the name they supply fully medically safe O2 and are familiar with the process. Please ask for Amy Viglione, (512) 272-9353. This is website. You can use the doctor letter template found on clusterbuster website. https://www.texasweldingsupply.com

Share Your Experience In the tradition of citizen science by Clusterbusters, we are conducting an online survey to learn about our community’s experiences with DMT. The survey asks questions about how people with cluster headache access and use this treatment, and what positive and/or negative outcomes they have experienced. Survey participation is voluntary and your personal information will be kept private. The survey will take you about 15 minutes to complete. Survey Eligibility Requirements: Adults 18 years or older Have cluster headache Have tried DMT for cluster headache treatment You will need to complete the survey in one sitting, so please start when you have enough time. Having complete responses is important to the integrity of the study. If possible, we recommend using a computer or tablet to take this survey instead of a smartphone. This survey study is being conducted in collaboration with Yale University. Thank you for sharing your experiences to help us understand and improve treatments for cluster headache. https://survey.alchemer.com/s3/8319518/Online-Survey-of-DMT-dimethyltryptamine-Use-in-Cluster-Headache

...yow!!...citizen science meets Yale....that's so cool i got frostbite....

Here is cost effective option for a regulator: Amazon to the rescue. As @jon019 said, you'll need a GOOD mask from here: Cluster O2 Kit As for the number of tanks, I have 8 E tanks sitting in my basement right now...waiting. So, the answer is you will need more than one tank. Even if you obtained the largest tank available, you'd still another to switch to when you ran the first one empty. Never get caught without something that works.

...an oxygen tank w/o a regulator is just a chunk of metal. for me an e tank lasted about 2 aborts and maybe part of a third, so yes, ya need more than 1. before m60's were available i always had 6 e's. get yurself a regulator (Amazon, or O2 shop, but that'll cost too much to lease or buy from them) and a deal with an O2 shop to swap out empties. an ABSOLUTE necessity is a non-rebreather mask, the best is from the catalog link at clusterheadaches.com. ask us more details please, i'm not quite sure where you are in this journey... best jon

This does not answer your direct questions, but might help some others. I asked ChatGPT, What apps are available for tracking cluster headache attacks? In less than five seconds, I got this answer. Top Apps for Tracking Cluster Headaches 1. Migraine Buddy Platform: iOS, Android Features: Logs attack times, intensity, symptoms, triggers, medication use Sleep tracking and weather correlation Customizable entries for cluster headaches Pros: Highly customizable, clean interface, useful for medical appointments Cons: Focuses mainly on migraines, but still works well for clusters 2. Hale Headache Diary (formerly "N1-Headache") Platform: iOS, Android Features: Developed with neurologists Tracks attack severity, triggers, response to treatment Generates reports for doctors Pros: Data-driven; cluster headaches supported Cons: Requires some setup time 3. Headache Log Platform: Android Features: Simple and fast interface for tracking headaches Track duration, severity, triggers, medication Pros: Easy to use; supports cluster headache tracking Cons: Limited export options 4. Migraine Monitor Platform: iOS, Android Features: Real-time monitoring and sharing with providers Community support features Pros: Good for collaborative care Cons: More migraine-focused, but clusters can be tracked 5. Cluster Headache Diary Platform: iOS (less common; may not be available in all regions) Features: Designed specifically for cluster headaches Logs cycles, duration, oxygen use, medication Pros: Tailored for cluster headache Cons: Limited platform availability and updates Bonus: Data Export & Doctor Reports Most of the above apps allow exporting your data as a PDF or CSV, which is valuable when consulting with a neurologist or headache specialist. Recommendations Based on Use User Type Recommended App Want simple tracking Headache Log Want rich features + analysis Migraine Buddy Want provider collaboration Migraine Monitor Want cluster-specific tracking Cluster Headache Diary or Hale Headache Diary Would you like a printable comparison chart or help picking one based on your device and preferences?

This is a question that has been on my mind more lately. I work as a pastor, so pretty much control my weekly schedule and by God's grace have never had a cluster on a Sunday morning. I was episodic for 12 years, but for the last 14 months I've been chronic. For the the largest part of that I have averaged 1-2 attacks a day. But the last couple of months some weeks have been 2-3 per day. The lack of sleep, and the likelihood that one will come on a Sunday morning, have really weighed heavily on me. Appreciated reading these testimonies. Thanks.

...i was also lucky in having an understanding employer who recognized i needed some accommodation. i also recognized that my situation might cause added burden to colleagues.... so to "compensate" their wonderful understanding, i made myself as indispensable as possible. crap project? i'm there, OT or holiday work?, got it. extra "jobs" beyond normal responsibilities? yup. no one, and i mean no one, ever heard me whine or complain. tough job made tougher...but that's what CH does. totally upfront with direct supervisor, theirs, and HR so if you are not as lucky as me they cannot say: we didn't know when they (try to) fire you......

Introducing our Team: Bob Wold - Founder/Executive Director Episodic cluster headache with periods of chronic - 40+ years Lombard, Illinois Duties include: Everything from legislative, education of clinicians, research initiatives, to conference planning and fundraising. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

I feel I am lucky to have an employer that understands what I deal with. Maybe not 100% but they let me come and go as needed, keep oxygen tank in my office and work from home when needed. I am 100 % honest with them and they work with me. When shit hits the fan and I am in a bad cluster bout I work less, when things are good and I can I will make up he time I cut out when I could not make it a full day. I am chronic and get hit every day but the timing is still predictable but changes from day to night on occasion. I take the D3 regimen, oxygen, 5hr drinks and bust. Tweaking everything to find the best method for me. It still sucks and I still go into that dark place from time to time but it always works out in the end. If I did not have a understanding employer I do not know what I would do. Maybe you could employ someone to work for you so you can be more "hands off" when things flare up? Adjust your schedule around your clusters and let people know what you are dealing with. It could be a good way to spread awareness? Try to think of ways to make this shit condition work in your favor?

Well, it is one of my job responsibilities to say here that for at least 95 percent of people who have said here that oxygen doesn't work for them, one of two things has been true: (1) they had not used oxygen properly, probably due to a doctor's wrong prescription or a medical oxygen supply company giving them the wrong equipment or not having optimized the equipment that did have; or (2) they didn't have CH. (I'm not being facetious about #2: There are some CH lookalike conditions for which oxygen is not effective. But since triptans did work for you, I think it is unlikely, but not impossible, that you don't have CH.) If any of the following situations was true for you, then you really need to try oxygen again, because it makes a huge difference. IF... (1) ... you got a concentrator (machine that makes oxygen out of room air) and not tanks/cylinders; (2) ... you had anything other than a non-rebreather mask, such as nasal cannula or some kind of mask other than a non-rebreather; (3) ... you found that the rate of oxygen flowing into the bag on your mask was too slow to keep up with a correct pace of breathing .... THEN you didn't really have a proper test of oxygen. Since you say oxygen had "no effect," I'm kind of assuming the culprit would have been #1 or #2. Or of course it is possible that you are in the very very small minority for whom O2 doesn't work, but I wouldn't want to accept that until I was sure I had given it the best shot. We have seen too many times here people who thought that oxygen didn't work for them but then tried again and found that it does.

Introducing our Team:⁠ Anna Williams - Vice President⁠ Chronic Cluster Headache 13 years⁠ New Albany, IN⁠ Duties include: US Conference Planning Committee, ClusterBuddies Coordinator, 5k Coordinator⁠ ⁠ Clusterbusters 20th Annual US Patient Conference⁠ Grapevine (DFW), TX September 11-14th⁠ Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT.⁠ More information and register here: https://cbdallas2025.planningpod.com/ Just a note our room block is filling up fast! Be sure to book your hotel (and register too so we can plan well!)

Ok thank you. Will check my levels. So far I'm just trying foods high in potassium etc. seems to working .

Prednisone can lower potassium, which may cause cramping, but taking high doses of potassium without checking levels first can be risky. It’s a good idea to ask your doctor for a blood test to check your electrolytes.

Have you wondered how NIH funding affects research for cluster headache? NINDS is the department for most headache diagnoses. We are honored to have Dr. Michael Oshinsky as a presenter. He works within the office of NINDS and can explain the impact of research on our community Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

The eye droop and those intense shadows sound really tough to deal with. It’s good to know that pressing or slapping the area can sometimes make things worse something to avoid. Hope you’re able to get some rest and that those attacks ease up soon.

It sounds like you are getting the eye droop? I used to get those once in a while but not too much lately. Do you do stuff like press on your eye or slap you head? I really try to avoid those things. Many CH people have squished their eyes to heck. As for shadows, they def can vary and some are so strong that it's not far off from attack level pain! Hang in there warrior, I too had a huge set of attacks last night and I am trashed and full of shadows today.

I asked an A.I. image generator to convey the dark agony of a cluster headache...

Pretty good and normally I would have said brilliant but recently I was ina consultation with my consultant who is the UK leading specialist on CH and she asked me 'what does it actually feel like'? I then realised how little she truly understood us. She read the books and carried outvsome experiments but ultimately it's just a topic of interest for her, not a desperate desire to have a normal life. In response to her question i said 'it's like being axed in the skull 8 times a day and still trying to carry on with life as best you can'. Her response was 'oh wow I've never heard it put like that ' Moral of the story.. we CHs need to stick together because nobody understands us not even the so called medical specialists who treat us

i had the same experience. haven't touched that stuff in 15 years.

Cool. Just completed it!

Not exactly sure what the question is...... This is sound advice. @jrc give us a little more information as to what you are trying to achieve.

....i always had 4-6 e tanks in house...used mostly for travel and work...for home it was 1-2 m60 which lasted at least twice as long as an e. regulators for each (different) can be purchased on Amazon and i bought 25 lpm versions tho i usually only needed 12-15....

....good news and bad news...the worst hit i ever had (an 8 for 6 hrs that scared ICU nurses) was because a f*****g anesthesiologist blew me off when i begged him not to use epi. the good news: it did NOT trigger a cycle....

June is Migraine and Headache Awareness Month Our patient conferences are so important - there's no other place where you will see over 100 people gathered in a room who are affected by cluster headache. This is vital to those who experience cluster attacks but also to the Care Partners as well. There are clinicians who not only come to share their knowledge, but it's a time for them to sit with our community and learn as well. We have it all in Grapevine, TX September 11-14th. Whether this is your first conference or your 20th, we want to welcome you! More information and register here: https://cbdallas2025.planningpod.com/. IF you aren't sure - comment, message, email us and we can chat about it. It can be difficult to walk into a place and not know anyone, especially when you experience a disease that has you running to hide. We have a ClusterBuddies program and one way that program can help is we can pair you up with a longtime attendee so that you already know someone before you arrive. Clinicians, we will be offering CME/CEUs! We are excited to have you with us as well. We want to get to know you and be able to help you feel better equipped to help your patients with cluster headache. Pain free wishes to all From the Board of Clusterbusters and our Founder/Executive Director Bob Wold

Have you been misdiagnosed with migraine or had a delayed diagnosis because you have migraine? Dr. Stephanie Nahas of Jefferson Headache Clinic has been involved in creating a program for cluster headache. In the world of headache, a more rare condition such as cluster headache can be lost when migraine is so much more common. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

...i have no comment on vit C for any claims made...just don't know! i will say, as a former microbiologist, that i've been sick (flu/cold/virus) only a couple of times over 45 adult yrs. it's not complicated....wash your hands frequently (at least thoroughly once/dy), DON'T touch your face, if you touch public elements (door handles, elevator buttons, railings, etc) sanitize your hands, avoid as much as possible obviously ill folks, be aware public gatherings in enclosed spaces require diligence to above (go, enjoy, just take precautions), cover YOUR mouth/nose when someone sneezes, refrigerate foods before 2 hrs exposure to room temp ( thats a food safety deal). i'll stop now...no need for paranoia...just remember: wash/sanitize hands, don't touch yur face....

I have also put regulators on my go to list when people ask me what I want for birthday/Christmas or anything else. Also mix in a mask once a year. I keep "extra" in the car home and work.

Cyman, do you have oxygen or some other abortive (a triptan such as Imitrex or Zomig; DMT)?

Don't feel too lonely i also had a massive attack last night and 2 light attacks. Today felt like I was beat. I tell myself during the attack that this will pass. I keep groaning and trying to remind myself it will pass. Sorry I can't offer more but I feel your pain

I’ve used a few cheaper regulators and found that you get what you pay for. Some worked fine for a while but had flow issues later. It’s worth checking reviews and ensuring the regulator is easy to adjust. Look for ones with warranties or easy replacements.

The last regulators I purchased a few years ago were here: https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 I have no complaints. I did have one fail in the past and they did replace it for me.

I wonder if this might have anything to do with the amount of negative ions generated by the surf? I know it sounds silly and no I'm not a hippy chick or anything (nothing against them I'm just not one). It sort of makes sense when you think about the fact that humans are primarily made of atoms and molecules, with ions having a role in the biological process of things like nerve impulse transmission, muscle contraction etc. Ions are basically atoms that have gained or lost electrons, resulting in a net electrical charge. Anyhoo just a thought. Full geek out moment over!

Bill is a long-time veteran of cluster headaches. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during our pre-conference: “Oxygen Demonstration.” This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

A Beloved Clusterbusters Tradition: The Silent Auction & Raffle! Get ready for one of the most fun and anticipated moments of our in-person conference—the Silent Auction and Raffle! This time-honored tradition is not only a great way to connect and celebrate, but it also helps raise critical funds to support Clusterbusters’ mission.⁠ Attendees are invited to bring items to donate! We love seeing a mix of: Psychedelic- and mushroom-themed treasures Unique gifts representing your home state or country Handcrafted, funny, or one-of-a-kind treasures Expect some lighthearted competition, lots of laughter, and maybe even a friendly bidding war or two. It's a moment of community, creativity, and generosity—all for a great cause. Come ready to donate, bid, and have a blast! ⁠Let’s make this year’s auction one to remember. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

I would strongly encourage you to discuss these leg cramps with your doctor. It certainly could be from the prednisone, but there are some serious side effects of prednisone that can cause pain in the legs, like blood clots. i don't say this to alarm you, but if simple measures aren't releaving the cramps, please call your doctor. Prednisone can work wonders sometimes, but it is important to be aware of uncommon serious side effect potential. I had a blood clot in my arm when i was on prednisone, fortunately it was in a surface vein so it didn't turn out to be serious. But it felt like a tight muscle for a couple days before i realized something else was going on. Let us know how you are doing, we care!

July 5th is Cluster Headache Survivor Day - a day to celebrate bravery, courage, strength, empathy, and hope. Pain free wishes to all and H.O.P.E.

Stijn, I appreciate your non-defensive responses to questions! Language like this "The reason your CH cycle started..." kind of triggers me (in contrast to maybe something more like, "My hypothesis for the reason your CH cycle started...."). But, like I say, I admire your openness in interactions, and I admire the effort you are making to learn whether your theories hold true.