Cluster headache is a lonely condition. It is rare, so most people have never heard of it. The attacks often come at night, when the rest of the world is asleep. And the pain is so hard to describe that even the people closest to us struggle to picture it. For a long time, many of us carry it largely on our own.
That is exactly why these meetings exist. Once a month, people affected by cluster headache across Australia and New Zealand come together online to talk, to listen, and to be reminded that we are not doing this alone.
When we meet
We meet on the third Sunday of every month at 6:00pm New Zealand time, online. The meeting is free. You can join from anywhere, on a phone, tablet or computer. You are welcome whether you have lived with cluster headache for years, are newly diagnosed, are still trying to work out what is wrong, or are a family member or carer supporting someone you love. Health professionals who want to understand the condition from the people who live with it are welcome too, as is anyone who simply wants to learn more.
What happens at a meeting
There is no set script and no pressure to perform. We share what has helped and what has not. We talk about getting a diagnosis, about treatment, about the fear that comes before a cycle, and about the ordinary business of living between attacks. Some people come with questions. Some come to offer what they have learned. Many come, at least at first, just to listen. That is completely fine. You never have to speak, or turn your camera on, if you would rather not.
What people tell me they take away is simple. It is the relief of being in a room, even a virtual one, where nobody needs the condition explained to them. Where "it is like a hot poker through the eye" gets nods, not blank looks.
Who hosts them
I host these meetings as the founder of Cluster Headache Aotearoa NZ, on behalf of Clusterbusters for the Australia and New Zealand region. Clusterbusters is one of the longest-running patient-led cluster headache organisations in the world, and it has supported people through this condition for many years. Being able to run a regional meeting under that banner means you are connecting into a much larger community of people who get it.
A word on safety and privacy
These meetings are peer support. They are not medical care, and nothing said in them is a substitute for advice from your own doctor. To keep the group a safe and private space, we ask people to register rather than sharing an open link, and we do not publish the meeting details anywhere public. What is shared in the meeting stays in the meeting. Once you register, you receive the joining details, and we send a reminder before each meeting so you do not have to keep track of the date.
If you are ever in crisis, please reach out straight away. In Aotearoa you can call or text 1737 any time to talk with a trained counsellor, or call 111 in an emergency.
How to join
Everything you need is on our support meetings page, including the next meeting date and the link to register. It takes a minute, and you only need to do it once.
If you have been carrying this on your own, I hope you will come along. Bring your questions, bring your experience, or bring nothing at all except yourself. We will be glad you did.