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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!

....OXYGEN, an opti-mask nonrebreather mask or direct tube, (other sourced demand valves the Cadillac worth investigating) from clusterheadaches.com, a regulator of 15-25 lpm (Amazon), energy drink or strong caffeine drink (5-hr energy my fav, no sugar, more caffeine/taurine than most), hit that O2 the first sign of a hit, try various breathing techniques like hyperventilation, breathe and hold, slow breathing....or a combination.... ...and please do listen to Shaun...he knows whereof he speaks....suma and other triptans should only be used as abort of last resort. the near instant relief is so enticing it can lead down a rabbit hole of hit/abort/rebound....rinse, repeat and ride the agony train... best jon

...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.

Hi @Subreally good that you have a neuro that understands CH, that's the first step and normal that's one of the hardest, as for verapamil really works well for chronic and episodic,but not for everyone, biggest problem with varap is the dosage needed to be affective for CH, with it being a blood pressure med it can cause serious damage ie heart block, really need to get on O2 life changer for most CH, as for samatriptain injections, just be careful can lead you down a horrible dark rabbit hole that really hard to get out of, have a look at the D3 vit ragime, again works for loads of us and your shadows may well respond to ginger,

...NOBODY who hasn't been "hit" understands...it's just not possible...and not something i ever held against.. ....the best HA specialist i ever had listened to my description: "pain so bad you can't believe its possible to survive, the worst ones...forgetting to breathe, i can't count the times i just wanted to die". she sucked in her breath like at least she partly understood. then said, which made me cry..."i treat this VERY aggressively, which she did!..probably too aggressively. but we figured out OXYGEN, Zomig ns as last resort, and (personally) energy drinks which she forbid because "we just don't know enough about taurine" (i did anyway, just had to).... ...but YES!...we are our own best, and frequently only advocates. what i've learned here and ch dot com have been life savers... best jon

Thank you Toni for serving the members in Finland- much love to all of you in Finland!

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

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,

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.

Hey everyone. Been awhile since i’ve been on here. I hope everyone is well and in good health. The last time i was on here, I made some pretty anxious and depression-ridden topics about how i thought my life was over.. boy was i wrong. I’m posting this to further support the tools and methods that have been written about on these forums.. and to possibly give hope to those that feel lost, as I once did. The last 4 years have been some of the most eye-opening years of my life. I’ve made drastic health conscious decisions that aided in my relatively pain-free years. I’ve tried “busting” and diet changes. Both with great success. I listened to my body and found that a combination of Vitamin D3, magnesium glycinate and omega 3 supplements help keep my headaches at low pain levels or at bay. An (almost) gluten free, no msg or additive, low histamine, anti-inflammatory diet helps maintain that low inflammation in my body. Sleeping with my head slightly elevated and neck supported also helps me keep the blood pressure from building. I also found that getting sick with a cold/flu will immediately bring a cycle on. I assume because of the sudden onset of inflammation in the body. Especially in the face/sinuses. Taking valuable information given by Pete Batcheller, (don’t know his @ at the moment, sorry!) the cycles have been very minimal in times where they should have been grave and unforgiving. I’ve learned to accept the fact that I may have clusters for the rest of my life. I’m 24 years old, and for the first time in the 16 years i’ve had clusters, I’m finally OK with it. Where there’s a will, there’s a way. But it’s important to keep in mind that pain free responses will not happen over night. Not every piece of information helped me. Some worked, some didn’t. Having a strong support system of people helped immensely. I can partially attribute my positive attitude to one of the “busting” methods that we know about. These headaches made me appreciate the little things in life, which in turn, makes life much more beautiful. Music sounds heavenly, sights are awe inspiring, love for those around me increase. I can live my life knowing I have the tools and resources to stop a cycle, should it come back. I also learned that hardships and trying times await each and every one of us, but will never make life not worth living to the absolute best of our abilities. The human spirit is truly indomitable. I extend my love and thoughts to everyone here! I’ll be sure to keep everyone updated as I grow older

Agreeing with both above! I was put on Verapamil at the start of my cluster journey. Wish I never started it to be honest. I have had no issues with my heart or anything like that but it did mess with the feeling in my legs when I was up at around 1040 mg a day. I have slowly tried to take myself off of the stuff and am now down to 120 one time a day. They say that that does nothing for clusters but I can tell for sure that s not true. I have cut that last dose out and was clean of all verap for about 5 days before I started getting my ass handed to me in a big way and jumped back on it. And because I love to torcher myself I have done this a few times with the same results. When I was new to the cluster game I did not know anything about them at all and like everyone else dealt with it thinking it was a toothache or something. I would get hit ere and there but nothing consistent. I started the Verapamil and an now chronic. I am not saying that is what made me chronic (my wife may say different) but it has been no lookin back since. Oxygen will be your best friend! 5hr drinks are your side hustle go to that you will tend to keep in your pocket at all times, Vitamin D helps a bunch of people and I feel does bring the pain down a few notches on that kip scale. Busting is not for everyone but definitely read up on it and not in the micro feel good about my life types, you need the cluster type who are trying to achieve a pain free life. Triptans are handy to have around for when you get stuck in a bad place and need that quick relief, and injection is the way to go for that. Just my 2 cents, I am not a doctor, this is just my experience. We are all different and you will need to tweak it as you go but the people on this site are pro's.

https://youtu.be/A8bA8sUG2Ig Just a little YouTube link to share with others about a few doctors discussing how they go about treating cluster patients. Not sure it was supposed to be shared but it may help someone or give another option that was not tried yet.

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?

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!)

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/

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

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....

I can’t say I’ve tried AI tracking tools, but it sure sounds like a good idea (thank you), while we wait for AI to figure out the 100% effective for all CH’ers, zero side effects treatment (some of us tapping fingers impatiently ).

Hi. I also have clusters for 15 years. The first twelve years i kept working (mailman) but as the years went by the CH got more intense with attacks during the daytime so i crashed from not sleeping for months and went on sickleave. but now i am in the WIA( disability income insurance) And i do not have to work anymore. besides cluster i also have complex pain syndrome. Tinnitus and i have ASD. these things together got me a disability income. but i live in Europe. I guess you are living in US so it will be more difficult or impossible to stop working and get money from your insurance. goodluck with finding a solution for your problem

...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 found for me, imitrex were causing longer cycles and rebound Ch's really soon after each attack. Here is SA, they are no longer available as well. I think 02 is the best way. For me, Prednisone and loading D3 is helping. I went 1 week without an attack or shadow. I actually thought my season was over, but the other night I had 8 attacks at night. I don't know how to tell if the season is over anymore cos I used to count 7 days and if I'm completely pain free after the 7th day, I know it's over. Now I'm not sure anymore. I don't get day time attacks this season. Not 1. Just gets me at night. I think the timing of the Prednisone has to be spot on when I take it at 10 am everyday in-between food. That seems to be helping me this cycle. I have those rare nights with multiple attacks as mentioned above. Also noticed that it happens on a full moon always.

I use empty prescription bottles I have. I fill up as many days as I need to take with me and have kept them in my carryon bag and/or checked baggage. I have yet to be asked any questions. I only have flown in the US but have taken cruises wit no issues either.

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.

I haven't been traveling a lot in recent years, but when I do, I don't bring along all of the individual supplement bottles - I condense my pills into a dispenser something like this one, and that works well enough for me. With all the pills so many people take, I imagine they are plenty commonly found in luggage and carry on, and TSA doesn't bat much of an eyelash when they see them.

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

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.

Yea, I think it's a valid question now. I was in a meeting yesterday actually on behalf of several chronic pain organizations and it was with a staffer of a senator on that committee that is setting the tone for cuts, and they just don't get it. They don't understand that we had pennies and now they are cutting up our pennies. BUT, I hope Dr. Oshinsky can talk through research. I heard him talk a couple years ago and it was really amazing- and one of things we have to do, is get in the rooms- many areas of government and outside of government - there are patient voices on panels in the rooms - and we have to get seats in those rooms.

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!

...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?

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/