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I think most people who have come here from the UK have been prescribed O2 and received it. Maybe something has changed??? Are you doing the D3 regimen? D3 regimen - ClusterBuster Files - ClusterBusters You know about splitting triptan injections? Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters DMT? DMT experiences and advice - Theory & Implementation - ClusterBusters I haven't checked on OUCH-UK for a while, but it has in the past been a very valuable source of advice and support. OUCH(UK) - The Cluster Headache Charity | Support for Sufferers & their Families

A discussion here: Migraine and cluster headaches: Treatments and respect are hard to come by.

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

It's far too early to say much due to the aggressive nature of CH but over the past 3 days I have treated each attack with only red bull and ice packs and for the most part it seems to have a significant effect in reducing intensity and duration. I avoid my triptan shots as I'm mid bust atm and living in a 3rd world country called UK I don't have access to o2. Basically if it wasn't for this group of ppl on CB.org I'm on my own... Will update again in due course. I appreciate though it's very much horses for courses and what may help one person may not help the other. Im currently 5 weeks into my episode and fed up doesn't even come close to describe it. Every single time I lapse into a sleep I get a massive attack. Im functioning on max 2 hours a day of sleep made up on 30 minute cat naps. I never knew the human body can function on such little sleep although I barely describe myself as functioning I'm more just trying to survive

Ive been begging the pathetic nhs for o2 and I can't get any. How did you manage it? I literally have no support except for occasional prescription for 2 nasal vials of that awful triptan. They simply don't care about me and forgotten me completely

I know this is an old post topic but I tried red bull twice this week and both times I felt the attack ease and even dissipate. I don't remember to take it as soon as the attack starts but nevertheless have had positive effects. I will post more updates as I just purchased a big box of these for emergencies and plan to continue using until it shows its not working or is working etc.. We are in it together so let's keep it together x

Sounds like there may be some early signs of change, which is promising. That link between your migraines and clusters is really interesting, and it makes sense to try targeting the migraines first. I came across this article that outlines how Botox is typically used for migraines, including where the injections go, it might be useful to skim http://injectco.com/services/botox-for-migraines-arlington-tx/ Hope things keep moving in the right direction.

I am glad it was not a blood clot! I am sorry I did not respondf or so long, still getting used to the notifications on this forum. Prednisone is such a double-edged sword.....!

...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

Aww - sorry you’re going through all that! I’ve been dealing with this in the C2-C3 and C3-C4 facet joints. NOTHING has helped! I did steroid injections about six weeks ago and it didn’t do anything. I’m out of CH cycle and it did not cause a flair up or anything.

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

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/

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

That is really ridiculous. I thought south Africa was bad. Sorry buddy. I hope they change their ruling. The issue is that there is no one that has heard of chs. Every person I have ever mentioned it to, has never heard of it.

Completed. A couple of questions could have used an answer other than yes/no, but this survey should be VERY helpful.

Thank you!

Cool. Just completed it!

Long tradition, of course. Dr. Sewell, who was among the first to study and write journal articles (early 2000s) about psychedelics and CH, taught at Yale Medical School.

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

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

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!

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

I have an e tank now but only one and no regulator. I read I needed a bigger tank but am having trouble getting one so I'm wondering if multiple e tanks will work.