clusterheadache.org.nz: building something useful for Kiwis with cluster headache

I am working on clusterheadache.org.nz as a more public-facing home for cluster headache information and advocacy in New Zealand. The plan is simple in intent and serious in execution: form a trust, get clear information in front of Kiwis who need it, and advocate for better access to oxygen and better guidance for frontline clinicians.

This is personal for me, but I do not want it to become only a personal project. Cluster headache is too severe, too misunderstood, and too easy to mishandle when the right information is not available at the right moment. A person in cycle does not have the luxury of waiting months for the system to slowly work out what they are describing.

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Why a New Zealand-specific home matters

There is excellent information overseas, and there are strong international patient groups. But New Zealand needs something that speaks plainly to our context: our health system, our access pathways, our prescribing realities, and the practical gap between what guidelines say and what people can actually get when they are desperate.

The aim is not to replace doctors, neurologists, pharmacists, emergency departments, or existing international organisations. The aim is to make the path clearer. Better information should make clinical conversations easier, not adversarial.

The trust

I am working toward forming a trust so this has a structure bigger than one person and one website. That matters because advocacy needs credibility, continuity, accountability and governance. A trust can hold the mission properly: public education, evidence-bound communication, patient support signposting, and practical advocacy around access.

It also creates a better container for collaboration. This needs input from people living with cluster headache, clinicians, supporters, researchers, and people who understand the New Zealand health system from the inside.

Oxygen access

Oxygen is one of the central advocacy issues. Many people with cluster headache know the experience: the condition is recognised in the literature, oxygen is widely discussed as an acute treatment option, yet actual access can still feel inconsistent, confusing, slow or dependent on who happens to be in the room.

The goal is not to publish DIY instructions or encourage anyone to self-manage outside medical care. The goal is to advocate for clearer access pathways and better shared understanding so that people are not left trying to explain one of the most painful conditions in medicine while they are already in crisis.

Clear guidance for GPs

GPs are often the first serious point of contact. That makes GP-facing clarity essential. The information needs to help with recognition, urgency, referral pathways, and the practical questions that come up when someone presents with short, severe, one-sided attacks and autonomic symptoms.

I want clusterheadache.org.nz to help reduce the burden on both sides of the appointment. Patients should not have to arrive with a stack of printed forum posts. GPs should not have to piece together rare-headache guidance from scratch in a fifteen-minute consultation.

What comes next

• Build the public information base at clusterheadache.org.nz.
• Keep the language evidence-bound and careful: no miracle claims, no overreach, no pretending the science is cleaner than it is.
• Move the trust structure forward so the work has governance and continuity.
• Develop patient-facing and GP-facing material that is clear, usable and specific to New Zealand.
• Advocate for oxygen access and practical pathway clarity without turning the website into a treatment-instruction shortcut.

This is the most meaningful health work I can do right now. I have spent a lot of time digging through cluster headache research, patient reports, oxygen discussions, vitamin D material, psychedelic reports, mechanisms, contradictions and uncertainties. That research still matters. But research only matters to a person in pain if it eventually helps them find a clearer path.

That is what this is for.