eagleswings

I'm launching a new zoom support group for Illinois- everyone is welcome, though being able to connect to people in the area will be the main goal. Nearby areas are most welcome as the resources will be helpful to you as well. To get an invite you can message me your email address or fill out this form: https://forms.gle/kNpeB678DQzNyW9G7 The group will meet the 3rd Thursday of every month at 7pm CT. Feel free to drop in anytime!

It's lower than many might use yes, they are trying a lower dose that would not induce a trip and it's taken every 3 days.

Note: This trial is only for people who live near the Netherlands and speak Dutch. Please share it to groups and individuals who may qualify. Deelnemers gezocht: LICIT-onderzoek Kan LSD helpen tegen chronische clusterhoofdpijn? Op dit moment wordt dit onderzocht in het LICIT-onderzoek, dat plaatsvindt in het LUMC in Leiden en in het CWZ in Nijmegen! Waarom LSD? Mensen met clusterhoofdpijn geven vaak aan dat hun klachten minder heftig zijn wanneer ze een lage dosis LSD gebruiken. Dit komt ook naar voren in vragenlijst-onderzoek. Daarnaast werkt LSD op dezelfde soort receptoren in de hersenen als medicijnen zoals sumatriptan en methysergide (Deseril). Er is daarom voldoende reden om te denken dat LSD goed kan helpen tegen clusterhoofdpijn. Maar LSD is nog geen geregistreerd medicijn, daarvoor is meer onderzoek nodig. Daarom wordt onderzocht of een lage dosering LSD effectief en veilig is als behandeling tegen clusterhoofdpijn. LSD is een psychedelische stof die in hoge dosering een "trip" kan veroorzaken, maar bij deze lage dosering gaan deelnemers niet ‘trippen’. Hoe werkt het LICIT-onderzoek? We vergelijken LSD met een placebo. Een placebo is een middel zonder werkzame stof, een ‘nepmiddel’. Deelnemers worden willekeurig ingedeeld. Groep 1: Krijgt 3 weken lang elke 3 dagen een lage dosis LSD (25 microgram) Groep 2: Krijgt 3 weken lang elke 3 dagen een placebo Deelnemen? Heb jij chronische clusterhoofdpijn en wil je deelnemen aan dit onderzoek of heb je vragen hierover? Neem dan contact op: Voor deelname in het LUMC (Leiden): LICIT@lumc.nl Voor deelname in het CWZ (Nijmegen): LICIT@cwz.nl Wat zijn het LUMC en het CWZ? Het LUMC (Leids Universitair Medisch Centrum) en het CWZ (Canisius Wilhelmina Ziekenhuis) zijn ziekenhuizen die gespecialiseerd zijn clusterhoofdpijn. Arts-onderzoekers in deze ziekenhuizen werken veel samen in het onderzoek naar clusterhoofdpijn om zo de zorg rondom clusterhoofdpijn te verbeteren. Zo hebben het LUMC en het CWZ (samen met andere ziekenhuizen) een aantal jaar geleden samengewerkt aan de ICON-trial, dit was een groot onderzoek naar de effectiviteit van ONS (occipitale zenuwstimulatie) bij clusterhoofdpijn. Naar aanleiding van dit onderzoek is ONS toen beschikbaar geworden in Nederland als behandeling van medicamenteus onbehandelbare chronische clusterhoofdpijn.

Wishing everyone a happy new year and pain free wishes to all.

Bob, Gary, Matt and Anna with the TAC committee at AHS (American Headache Society)

I just wanted to give an update. Bob and 3 of us on the board attended. We had tons of good meetings- just the amount of respect I saw regarding Clusterbusters was huge - from pharma to headache specialists...we have an amazing reputation. Got to see and hear Dr. Schindler, Dr. Burish, Dr. Nahas, and others present. Hopefully some more promising research coming down the pipeline!

Support Groups this Week Needing support? We have a group for you! TUESDAY: Do you live in California? Join Tuesday 7pm PT - message Clusterbusters or anna@clusterbusters.org for an invite link WEDNESDAY: Care Partners! Join Julia at 7pm ET - Register here: https://us06web.zoom.us/meeting/register/8AQ75ckZQn-ddzoYfreZbQ 8pm ET join Joe Stone - sign up here for the 2nd Wednesday of the month meeting: https://clusterbusters.org/get-support/ THURSDAY: Do you live in Texas? Join the Texas group by emailing gary@clusterbusters.org for an invite- it meets at 7:30 CT SUNDAY: Do you live in New Zealand or Australia? New Zealand: 6pm Australia AEDT: 4pm Australia AEST: 3pm Join Craig by registering here: https://us06web.zoom.us/meeting/register/jBEVM84QRs-RP6lgNdFCmw *You do not have to live in the region of the group to join.

Last autumn/winter we ran a survey to gather data on human suffering from a range of conditions and experiences, and you were kind enough to participate by reflecting on your own suffering and providing responses, for which we are grateful. Some of you gave detailed descriptions, all of which were read. We have now finished analysing the data and have written it up in a new post on the Effective Altruism Forum, which you can find here: https://forum.effectivealtruism.org/posts/hTGScBoBDKwmAcGP6/how-to-quantify-global-human-suffering-results-from-opis-s We included some of the text descriptions, which convey a sense of what some of the suffering is like, beyond the numbers. Of course there was no identifying information disclosed. We plan to submit a reworked version to an academic journal, making the case for suffering metrics and for a larger survey that builds on what we learned from this first one. Our goal is for the prevention and alleviation of suffering, and especially severe and extreme suffering, to become a top priority of our governments at all levels. If you’re interested, you can also have a look at our recently published Compassionate Governance: A Strategic Guide to Preventing and Alleviating Global Suffering. Many thanks again, and wishing you to be free of suffering, Jonathan

Clusterbusters Executive Director and some board members will be in Scottsdale, Arizona this week. First a CHAMP Coalition meeting and then the American Headache Society Meeting- many of our favorite clinicians will be speaking! Looking forward to hearing updates and getting more ideas of ways to help our community. https://headachemigraine.org/coalition/ https://americanheadachesociety.org/events/2025-scottsdale-headache-symposium/agenda

Hi all! I'm considering starting a new local/regional support group for Illinois since we have a conference every other year in Chicago. Any ideas on days/times that would be good for attendance? Would a 6pm CT or 7pm CT on a weekday work well or a weekend day/time? I'd like to be able to advertise something like the 2nd Thursday of the month at 7pm type of time so it's consistent. Open to ideas and I'll lead it until someone else feels comfortable and I will always be available for support. Just thought this might be helpful and if there are people who have an idea of another location that could use a virtual/zoom support group, let me know. We have California and Texas and both have been really amazing groups.

We had Dr. Rev. Tammy Isaac come to our conference this year. I reached out given November is Family Caregiver Month and she sent me these resources and she will create some NEW content for us next week! I'll try to remember to add them to the thread when they go live. Our Care Partners are so important! We want you to know how much we care and appreciate you - and remember...you can experience grief in this process too. We have Care Partner groups and programs! ⁠ ⁠ Below are some resources from our amazing friend Dr. Rev. Tammy Isaac. Those who were at the conference heard her speak, she has some resources I'd like to share. Please take a moment for you to read/listen to these- and know how much gratitude we have for you.⁠ ⁠ Blog Post: Carrying Love, Carrying Loss: The Caregiver’s Journey⁠ https://www.breathegriefcounselingcenter.com/post/carrying-love-carrying-loss-the-caregiver-s-journey⁠ ⁠ Permission to Breathe Podcast Episode: Caregiver Grief: Loving Through Loss Before Goodbye⁠ ⁠ Spotify: https://open.spotify.com/episode/5nqQFAs5Xre7m0HF5LJkGE?si=4iaIx_lYTiW6sU9Psrxnrw⁠ ⁠ Apple Podcast: https://podcasts.apple.com/us/podcast/caregiver-grief-loving-through-loss-before-goodbye/id1767836754?i=1000721385568

Clusterbusters is partnering with another nonprofit organization - ClusterFree. https://clusterfree.org/⁠ ⁠ They have sign on letters. One is global, then there is a list of locations - please check their site for both. They are working to:⁠ ⁠ To achieve our mission, we:⁠ ⁠ Publish open letters demanding that governments, regulatory bodies, and medical associations worldwide take action immediately.⁠ ⁠ Engage with policymakers globally to advocate for better access to treatments.⁠ ⁠ Publish research on cluster headache and support other researchers in the field.⁠ ⁠ Collaborate with entrepreneurs and philanthropists motivated to bring effective treatments to market.⁠ ⁠ Thank you ClusterFree for partnering with us and raising awareness of cluster headache on a global scale!

Do you experience Hemicrania Continua? We are starting a new group for those who experience another TAC (trigeminal autonomic cephalgia) called Hemicrania Continua. People experiencing this have 24/7 pain as well as other features that while can be similar to cluster headache. We want to support our siblings by giving them a place to meet others and also to reach out to the community with this support option. Third Thursday of the month at 1pm ET To attend, send Anna an email at anna@clusterbusters.org and she will add you to the calendar invite with the zoom link.

Care Partners Experiencing burnout? Feeling overwhelmed? Want to learn self-care tips? We want to support you in YOUR journey! Starting November 12th, Julia will be hosting a support group on the 2nd Wednesday of every month at 6pm CT/ 7pm ET Register in advance for this meeting: https://us06web.zoom.us/.../register/8AQ75ckZQn-ddzoYfreZbQ After registering, you will receive a confirmation email containing information about joining the meeting.

Craig Stewart is launching a new support group for those in New Zealand and Australia. It will meet on the 3rd Sunday of each month at: New Zealand: 6pm Australia AEDT: 4pm Australia AEST: 3pm Register: https://us06web.zoom.us/.../register/jBEVM84QRs-RP6lgNdFCmw After registering, you will receive a confirmation email containing information about joining the meeting. If you have any questions, contact Craig at Craigedstewart@gmail.com or Anna at anna@clusterbusters.org