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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

....well, it's a given Shaun is quite batty, but as for myself...i am perfectly normal since the transplant...

Welcom to the CH club, we are all a bit mad in here, but we have lots of knowledge, so ask questions, tell us your experiences

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

Dan, is this a standard aborting time for you, or is it sometimes faster? I'm going to paste some info here that might help you speed it up a bit. >>>You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/. The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below. You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc. Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale. Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap). Be sure you are getting a good seal, particularly if you have facial hair. You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2. Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere. Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly. One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank. A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information.

@DanPit's great that your only using once a day. but temptation is always there to use more as the relief from the pain is so fast, triptans can cause really bad rebound attacks that can be alot worse than your initial attacks, plus triptans can prolong your cycle, you only need 2mg to abort with triptans so consider splitting your injection (easily done) I've been down the dark rabbit hole with triptans, I got to a state where I was using up to 5 injections a day, prolonged my cycle by around 3months with headbanging attack day and night, my body became so weak and after each injection I'd feel like I was going to have a heart attack, so please be really careful with them, don't get me wrong I still carry them with me if I out in public or go on holiday because it's not great to get an attack in public, but I never use them at home anymore I'd rather ride the pain if my O2 doesn't work but I'm lucky at present as O2 works for me, I do change my breathing techniques know and again, have you ever tried busting? And get on D3 ragime it really help alot of use

I haven't read anything about triptan use reducing the effectiveness of O2. Are you using the same provider? My first thought tends to want to lean toward a bunk tank or possible wear and tear of your existing set up? I'm sure you know the basics of O2 usage (suggested LPM's/mask type & breathing techniques etc.) but maybe it's time to change up your intake method? I've had many discouraging and maddening experiences with O2. Some that included me being convinced it just didn't work anymore and some where I was sure it caused the attack to ramp up. In the end I discovered a few things, some of which you mentioned (the sooner the better), the breathing technique that worked last time is not guaranteed to work this time and a quick gulp of something caffeinated prior goes a long way.

Triptans are a nightmare my friend, O2 works so well for many of use, what's your routine with O2?

I keep them in the car, the office and any other place I might be going to. I even take them on vacation with me. I figure they do enough work for me they deserve a little vacation too.

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

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

Poke around, read up and ask questions. You will be amazed at how many people are willing to help and share experiences. Key in on Oxygen and Vitamin D, they are the most recommended treatments to get started with.

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.

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

Hey all, relativley new here! Got diagnosed four years ago and have loosely followed the website since then and learned some excellent info about oxygen treatment. It has helped a ton! I finally feel comfortable enough to reach out somewhat so, here I am. Thank you.

Just completed survey

I appreciate i am very late to this conversation but I just want to drop in that red bull is now a key part of my armoury the moment the dreaded knock kicks in. I will post a detailed synoptic of my experience in coming days but for anyone suffering right now, seriously consider taurine. To me it's a life saver but I do have to say we are all different and some of us have intolerances and other complications so do be conscious of your personal needs. But if you don't have an issue with caffeine and taurine give it a go. Pour on lots of ice and gulp it freezing cold so it hits the back of your throat which is the nearest you can get to your pituitary gland without poking a hole in yourself. The cold soothes the brain and the taurine does some magic and at least dulls the agony. X

Hi everyone, I'm curious if anyone here has explored using AI or digital tracking tools to help manage cluster headaches - particularly for logging triggers, medication timing, or sleep patterns. I've been experimenting with a few apps and found that combining them with tools like voice-to-text or reminder systems has helped me stay more consistent. Would love to hear if others have tried tech-assisted approaches or if there are any apps or tools that have worked well for you. Always looking for smarter, less stressful ways to manage this condition. Thanks in advance!

I was a management consultant for many years. As I said to a former colleague the other day, ChatGPT is a better consultant than I ever was -- in less than a minute, and for free. I don't have grandchildren, but Chat is becoming like my grandkid, where I keep saying to others, "You'll never believe what Chat did today! Isn't this fantastic!?!" Still a bit of a jokester, though. I had it colorize an old black-and-white photo of my father the other day. Everything looked right, except that it was someone else's face! I pointed this out, and Chat said "Oh, gosh, you are right. Let's try that again." It did. A different face, still not my father's.

I'm loving my AI tools for web dev. My image assets, logo's and scripts are better than ever. You have to move with the tools because everybody else is...

Double barrel meow meows!!! All is rt with the world now

Sod off @jon019your mad as a hatter

Welcome, sorry you had to find us but glad you found CB. I had a chuckle at Shaun’s comment but I would agree we are a lovely but mad bunch. I am sure you’ll get the support you need here. I’d be another of the replies to encourage you to investigate the vitamin D3 anti-inflammatory regimen; has worked beautifully for me with eCH.

Very late to the festivities here, but THE SHOULDER KITTY HAS CURRENTLY GONE MISSING FROM THE ACTUAL AVATAR, and needs to be restored there ASAP, right @BoscoPiko??!!

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.

Of course! I think we can all agree that any and all help is appreciated! If there's anything I can do or say to help even one person with clusters, I'll certainly do what I can!

...ok, speaking for myself, not the "good father", but...1) cost, they lease it to you at ridiculous price, and its an ongoing scam 2) it aint pure O2, something like maybe 85-90+%, we desperately need PURE O2 3) warm up time!? golly that's a killer...every minute you delay oxygen reduces the effectiveness hugely...if it even works at all after any delay. 3) flow rate!?...if it aint enough to keep the bag filled for next breath it's nearly useless...to get more than 10 lpm ya need TWO of them linked....sheesh, try paying/travelling with THAT! 4) speaking of travel, i went EVERYWHERE with e tanks, including a job for 30+ yrs...ya gonna have severe limits with a concentrator. m60 for home, e for travel and backup. 5) they run hot...over heating is a CH symptom, why add it to your room? 6) can ya tell how i feel? it saddens me that some clusterheads have no option thru insurance or an ignorant/greedyO2 shop. if its all ya can get...God bless, and i hope it works for you...it does for some. the likely failure sadly also convinces some WRONGLY to claim the WORST comment a clusterhead can make w/o ABSOLUTE certainty..."oxygen doesn't work for me!" saved my sanity, perhaps life...starting in 1985... ...as for verapamil...i used successfully for 7 yrs...only stopping when i dialed in the oxygen and energy drink and a form of the vit D regimen. nothing less than480 mg/dy of immediate release was effective...over the yrs it seems to be the reported sweet spot for many clusterheads. in high cycle i went to 1000+. as chF said...80 is pointless... j

40mg/day is a very very very low dose. So is 80. As you say, you never know, but the likelihood of this helping you seems to me to be very close to zero.

...if ya want a direct tube to breathe through, any mask will do by just pulling tube connector off mask...cutting off if ya hafto. i couldn't do because it was uncomfortable and the pressure of the mask, CRAMMED into my face, actually helped. just be sure to plug/squeeze nose so you are getting pure O2 only...which is critical.... ...btw...if you got a typical nonrebreather be sure to tape shut those dang holes on the side...a slight lift off the chin to exhale worked best for me... j

yes, get oxygen. yes, consider busting preventively during the year. definitely start on the D3 regimen, which will be as effective preventively (for future cycles) as the verap. just a few more words on the verapamil. first, it takes some weeks to get into your system, so if you can realistically anticipate a one-to-three-week cycle, there would seem to be no point, or very little point. prednisone is sometimes used as a "bridge" to quell the pain while the verap is taking effect. there are things to be said against prednisone, and using it more than once a year is strongly discouraged, but it could be considered, i would think, for cycles so short. except, as you say, why risk poking the bear. (also, verap dosage has to start pretty low, to make sure there are no issues, and then it should be monitored as it is increased. in such a very short cycle, it is very unlikely to help, and you don't want to be on it year-round in your current situation.)

as is said here -- welcome, and we're sorry you have to be here. you might want to start here for a general overview of some treatment things: Basic non-busting information - ClusterBuster Files - ClusterBusters The great people here will help you any way they can.

Stories like this give hope to those of us who are in the middle of an episode. So glad you found your sweet spot and wish you a life fulfilled and happy and pain free

Hi All, New user here, long-term sufferer - read on saturday night about the Taurine and Caffeine mix - just wow! Wish my doctor could've reccomended this, i feel jittery from the fairly high dosage but wow, i can actually think straight for once! Supposedly being delivered home oxygen sometime this week after nearly 2 years of run-around by the NHS. Reading up on the psilocybin next!

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

Have you had success with a treatment, then find it stops working? Dr. Chris Gottschalk will be talking about this as it is one of our frequently asked questions. Also - if you have registered but not gotten your hotel room- you need to reserve it asap. If you have a room, but haven't registered- please register so we can plan for your attendance! 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 had the same experience. haven't touched that stuff in 15 years.

Cool. Just completed it!

Aww big sigh of instant relief! Fabio's cool but Fabio with sholder kitty.. 2 cool for school.

Just as an aside to my post above, I have been using AI lately for complicated work projects with amazing results. If you haven't messed with AI yet, I'd suggest just going to ChatGPT.com and using the free version. I had pasted an image below, but it doesn't seem to show up. I asked ChatCPT to take a photo of me that I supplied and dress it up for my avatar, which you can see, This is completely trivial but an example of fun you can have. A more complex example, I asked it to give me a list of all Chicago Public Library branches located within a state legislative district (state house or state senate) where the legislator has a Hispanic surname. There are about 80 branch libraries and about that number of total state representatives, so you might imagine how long it could take to do this the old-fashioned way. With one more query, I had an answer in less than three minutes (about 90% correct). Or, if you ask about the best ways to treat CH, or the pluses and minuses of using psychedelics to treat CH, you'll get a perfectly good answer in a few seconds.

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 ).

....re disability, vet or not, it is critical to list any comorbidities...the award decisions can be so arbitrary that one seemingly insignificant one may be the key to success. i got disability for a serious but non fatal illness partly because my doctor listed the potential mental health issues caused by the disease that we had discussed. the SS approval letter specifically noted these potential effects as having significant weight in determining qualification. i will be forever grateful that my PCP had documented EVERYTHING...and was willing to sign off on the need for disability. find an advocate doc....its JUST like we need for CH.....

The info about the VA and how you got coverage is super helpful for vets who might be dealing with the same thing. I didn’t know head injuries could be linked, but your story makes a lot of sense. Appreciate you taking the time to post this.

...personal experience for me was 1500 mg taurine minimum to be effective (as energy drink ingredient...never tried as a supplement) best jon