Support
You are not alone with this.
Cluster headache is isolating. It is hard to explain, hard for others to understand and for most patients there is no one around them who has any idea what it is like. This page is about changing that.
Why community matters
One of the most consistent things cluster headache patients say when they finally connect with others who have the condition is: "I thought I was the only one." You are not. There are an estimated 5,000 to 10,000 New Zealanders with cluster headache. Most of them have gone through the same years of misdiagnosis, the same frustrating GP appointments, the same 3am attacks with no one to call.
Community does not make the attacks stop. But it changes something important. It means there are people who understand without having to be convinced. People who know what "being in the beast" means. People who have found what works and are willing to share it. And people who are just there, when the rest of the world is asleep and you are in pain.
Connect with other NZ patients
Get in touch with us
We are building a New Zealand community for cluster headache patients. If you want to connect with other patients in New Zealand, share your experience or find out what support is available in your area, contact us and we will do our best to help.
Get in touchCommunity presence map
If you want to, you can add an approximate marker to show that you are part of the cluster headache community in Aotearoa New Zealand. Email visibility is optional.
View the mapOnline communities
While a dedicated NZ community is still being built, the international online community for cluster headache is large, active and welcoming. New Zealanders are well represented in these spaces.
r/clusterheads on Reddit
A large, active community with many years of shared experience. You can ask questions, share what you are going through or just read what others have written. The community is knowledgeable, patient and generally very good at directing new members to reliable information.
Clusterbusters Forums
Community forums run by Clusterbusters, with years of lived experience and practical knowledge on treatments and coping. Not medically moderated.
Facebook groups
The Australia and New Zealand cluster headache Facebook group is a regional peer-support space for people living with cluster headache.
There are also several larger international cluster headache Facebook groups. These groups are not medically moderated but can be valuable for peer support and shared experience.
Mental health and wellbeing
Cluster headache does not just affect you during attacks. Living with a condition this painful, this unpredictable and this poorly understood takes a real toll on mental health. Anxiety about when the next attack will come, depression during long cluster periods, the impact on relationships and work and identity - these are all real and valid.
If you are struggling, please reach out. Talk to your GP about the mental health impact of your condition. The following services are available in New Zealand:
- 1737 - Free text or call, 24/7. Mental health support from a trained counsellor.
- Lifeline: 0800 543 354 - 24/7 crisis support.
- Youthline: 0800 376 633 - for those under 25.
You can also contact us directly. We cannot provide clinical mental health support, but we can listen and help connect you with appropriate resources.
Share your story
Reading or hearing from someone who has been through what you are going through - and come out the other side with the right treatment, the right support and some kind of equilibrium - can make an enormous difference. If you would like to share your experience with cluster headache, we would love to hear from you. See the patient stories page or get in touch.