Leaderboard

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

...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

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!

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 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.