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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

Strange you mention full moon. I notice the full moon having an impact ad well ad plummeting air pressure and recently I seem to get an attack smack on dawn each morning too. I think we CHs are wired differently we are connected to the universe and that makes us really special people. I think we were the chosen ones to bridge the gap between the humans and the higher entities of the universe. We sense things that other people don't notice and slight changes in atmospheric pressure or moon tides have a huge impact on us. Let's at least give ourselves this credit.. we are special people and heck, who else in the world can live a normal life after being axed in the head 8 times a day?

Yeah and that word 'headaches ' is terrible. Everyone says oh yeah i have migraines too... makes me want to shoot myself. Anyway some potentially good news. I started micro dosing yesterday and fingers crossed I have been pain free for nearly 18 hours. First pain free period in a month. Im scared to get excited but it's such a relief to not be in agony. I promise I will never complain about life again just give me pain free and I'm happy

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.

I live in a 3rd world country called England and because I smoke they won't prescribe me o2.... its ridiculous. I smoke outdoors and not holding an o2 cannister but no they have their own dumb rules. I was told to go to hospital if I want o2. First off when in an episode I can't even go to the toilet let alone a hospital and second by the time I get there the attack will probably have passed. It's sooooo frustrating

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.

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....

SORRY!!! Yes, dental anesthesia is very often a trigger. Most commonly, it's epinephrine that's the cause, because that is part of the standard anesthetic for "normal" procedures. I don't know about the three ingredients you list, and it would be very good to be able to tell others what to avoid. Is it possible to check to see whether anything they used was similar to epinephrine? (It's not unusual that someone has a question about anesthetics here, so the more we know, the better.) (The reason that epinephrine is used is that it limits bleeding and apparently also prolongs the effect of the anesthetic.) Of course, we can hope that there is just a short-term effect from this and you'll go back to the way things were before!

Hello All - I was an episodic and eventually chronic cluster sufferer for over 12 years but over 2 years ago I was able to kick the clusters due to a great vitamin d protocol that I found on this forum! Since then I have been doing great, however I just had my wisdom teeth removed 5 days ago and the last 2 days i have been surprised by 4 clusters up on the 7-8 scale. The anesthesia used was a combination of propofol, fentanyl, and versed and I am really nervous and upset that this may have triggered my dormant clusters. Has anyone had this experience? Did the cluster cycle last a long time? Im worried that I will just fall back to where i was a few years ago. Any advice or help would be great! VR

Just to clarify the question -- Do you mean connecting the e-tanks together somehow so you have a longer-lasting supply without having to switch the regulator from one tank to another? I'm pretty sure this can be done with welding O2 tanks, but I don't know about medical tanks. @Racer1_NC will know.

Can I use multiple e tanks with a 15lpm regulator or do I need a bigger tank?

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