eagleswings

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