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Have you been misdiagnosed with migraine or had a delayed diagnosis because you have migraine? Dr. Stephanie Nahas of Jefferson Headache Clinic has been involved in creating a program for cluster headache. In the world of headache, a more rare condition such as cluster headache can be lost when migraine is so much more common. 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/

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/

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/

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.

Have you wondered how NIH funding affects research for cluster headache? NINDS is the department for most headache diagnoses. We are honored to have Dr. Michael Oshinsky as a presenter. He works within the office of NINDS and can explain the impact of research on our community 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/

Bill is a long-time veteran of cluster headaches. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during our pre-conference: “Oxygen Demonstration.” This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

A Beloved Clusterbusters Tradition: The Silent Auction & Raffle! Get ready for one of the most fun and anticipated moments of our in-person conference—the Silent Auction and Raffle! This time-honored tradition is not only a great way to connect and celebrate, but it also helps raise critical funds to support Clusterbusters’ mission.⁠ Attendees are invited to bring items to donate! We love seeing a mix of: Psychedelic- and mushroom-themed treasures Unique gifts representing your home state or country Handcrafted, funny, or one-of-a-kind treasures Expect some lighthearted competition, lots of laughter, and maybe even a friendly bidding war or two. It's a moment of community, creativity, and generosity—all for a great cause. Come ready to donate, bid, and have a blast! ⁠Let’s make this year’s auction one to remember. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

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/

July 5th is Cluster Headache Survivor Day - a day to celebrate bravery, courage, strength, empathy, and hope. Pain free wishes to all and H.O.P.E.

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

Many apologies for the late notice! Jefferson Cluster Center Symposium: https://Jefferson.zoom.us/webinar/register/WN_pF0E7o9oQUqHJ-E5QnzJzg We will be starting at 8PM on June 24 (Tuesday) at 8PM. Dr. Michael Marmura will lead the discussion. This will be recorded- register to get updates on the recording.

Sign up for Clusterbusters 10th Annual #CureForCluster Virtual 5k, for U.S. residents purchasing a race bag, they can still be ordered to arrive on time if you order by the May 27th. Shipped Race Bags will only be available for purchase by U.S. residents as an add-on. We cannot ship outside the U.S. Our virtual 5k can be run or walked at any location, so you can join us from anywhere in the world. Registration is open through June 6th. The event will kick off on June 7th and can be completed any time in the month of June. We look forward to seeing photos and awareness raised for cluster headache. This year, we have partnered with Alliance for Headache Disorders Advocacy (AHDA) to support Headache on the Hill: A Visual Installation representing all headache disorders while our event continues to raise awareness and funds for cluster headache. For info and to register: https://runsignup.com/cureforcluster5k

Hi all, If you meet this criteria and would be willing to travel to PA to speak, reach out to me and I'll get you connected for an interview to see if you might be a good candidate. These are the qualifications: Cluster Headache Patient Male Aged 20-40 Diagnosed with episodic cluster headache (cannot be chronic), preferably by a headache specialist (we have seen patients frequently misdiagnosed as cluster) Currently prescribed more than 1 prescription medication option, multiple routes of administration (uses injectables or has past experience with injectables – no needle-phobia) Past experience with DHE in a hospital/clinic setting would be ideal, but not mandatory i. If he has had experience with DHE in those settings, hopefully it achieved relief

WOOHOO! Thank you to the moderators who put so much work into keeping this going! The forums are a wealth of resources but mostly amazing people who are helping those in need to connect to the information they need. Love you guys! Thank you! I don't post often but have read and gotten many answers and resources along the way of my own journey. And when I have posted or commented- the answers come quick!

Hi all, I'm Anna and I help manage Clusterbusters ClusterBuddy program. I have a request BUT I also wanted to take a moment to provide a bit of information as well about the program. My request is I currently have a need for more chronic clusterheads who have lived experience and feel up to helping someone newly diagnosed or has newly found Clusterbusters and really needs someone who "gets it" and can help them find some things that may help them- they may not have a doctor who knows how to prescribe correctly, may not know what to ask for, or may just need a listening ear. So a bit about the program: ClusterBuddies is a peer-to-peer and one-on-one program that connects you with a supportive, empathetic, knowledgeable, and experienced volunteer who understands life with cluster headache and can say, “I’ve been there too.” We provide monthly groups where we explore topics or share our experiences of helping someone else. You can reach out to me or another member of the team at any time. If you would like to come alongside someone and be their Buddy (we have a strong need for chronics, but episodics and those who have experienced both are welcome to apply!) https://docs.google.com/forms/d/e/1FAIpQLSeFvIXjreXUQ685AYZ0y0ehxCMOLFr3ODw2JOHY8SgvSF1xZA/viewform If you are that person that needs someone who gets it - you can apply here - no one should go through this alone- and we know many have never gotten to speak with another person with cluster headache- we want to connect you. You can apply here: https://docs.google.com/forms/d/e/1FAIpQLSet22ryEOeToWOlr6yLXXJsziCfnsPpl3P4QyY2qjVuPNV6lw/viewform

I'm in Indiana (near Louisville, KY) and I have my O2 approved by my Medicare plan. My O2 company refused to run it at first, I told them to humor me and they called within 24 hours saying it was covered (they were shocked...I was not). Anyway different regions can be different, ALSO make sure the O2 company runs it- ask them to show the denial