About cluster headache
Getting a diagnosis in New Zealand
The average time from first symptoms to correct diagnosis of cluster headache is often measured in years. This page is to help you describe your symptoms clearly to a GP, who can start treatment and consider whether a neurology referral is needed.
Symptoms to consider with your GP
To help your GP assess your headache, these are the features that matter most for cluster headache. Bring notes if you can:
- Severe pain on one side around the eye, above the eye or at the temple
- Attacks lasting from about 15 minutes to a few hours if untreated
- Same-side eye redness or tearing, a blocked or runny nose, a droopy eyelid, or a smaller pupil
- Restlessness or a need to move during the pain (unlike many migraine attacks)
- How often attacks occur, and whether they come in bouts with quieter periods between
Your GP is able to start treatment and consider referral to a neurologist. You do not need to wait for a specialist appointment before acute options such as high-flow oxygen or injectable sumatriptan are discussed, where they are appropriate for you.
Why diagnosis is often delayed
Cluster headache is uncommon. An average GP may see few cases in a career, and severe recurring head pain is often assumed to be migraine at first. Sinus and dental problems are also common early labels because of face and eye symptoms. That delay is usually about rarity and time pressure in primary care, not about you.
The diagnostic criteria
Cluster headache is diagnosed clinically - meaning the diagnosis is based on your description of your symptoms, not on a scan or blood test. The International Classification of Headache Disorders (ICHD-3) criteria require:
- At least 5 attacks fulfilling criteria B–D.
- Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15–180 minutes.
- Either or both: ipsilateral (same-side) conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, eyelid oedema, forehead and facial sweating, miosis or ptosis; and/or a sense of restlessness or agitation.
- Attacks occur with a frequency of 1 per 2 days to 8 per day during active cluster periods.
- Not better accounted for by another diagnosis.
In plain language: if you have repeated attacks of severe one-sided eye or temple pain lasting 15 minutes to 3 hours, with eye or nose symptoms or restlessness on the same side, and these come in clusters with remissions between them, cluster headache is worth raising specifically with your GP.
Use our cluster headache screening tool. It is not a diagnosis, but it can help you create a clear summary to take to your GP.
What to tell your GP
Be specific about the pattern. A short script many people adapt is:
"I am getting attacks of severe pain around my right eye [or left eye], up to [X] times a day, lasting about [X] minutes each time. The eye on that side goes red and tears. My nose on that side blocks or runs. I cannot sit still during an attack. The attacks have been happening every day for [X] weeks. Could this be cluster headache, and can we talk about treatment and whether I should see a neurologist?"
Adapt this to your own pattern and experience.
You can also download the GP fact sheet PDF from this website and bring it to your appointment.
Starting treatment and referral
A GP can diagnose and start treatment for cluster headache. If relief is incomplete, the diagnosis is uncertain, or preventive dosing needs specialist input, ask for a neurology referral. Public waiting times vary by region; private appointments are an option some people use when the wait is not workable.
Preventive options beyond first-line medicines are discussed on our other preventive treatments page, including CGRP therapies such as galcanezumab (Emgality) where a specialist considers them appropriate. Funding and suitability in New Zealand need to be checked with your clinician.
Investigations
Cluster headache is a clinical diagnosis and does not always need an MRI or CT to confirm a typical pattern. Imaging may be used to rule out other causes if the pattern is atypical, if this is a first severe headache, or if other neurological symptoms are present. A normal scan does not rule out cluster headache.
Keeping a headache diary
A short diary helps: date and time, side of pain, duration, severity, and eye or nose symptoms. After a couple of weeks of attacks, a clear diary is hard for any clinician to overlook.
If you have been treated for migraine but your pattern matches what is described here and those treatments have not helped, it is reasonable to ask again about cluster headache. A correct label unlocks the right treatments. Contact us if you need support navigating the system.