Cluster headaches bring excruciating, one-sided head pain along with other symptoms on the affected side, like a teary or droopy eye, nasal congestion or a runny nostril, facial flushing, and sweating. An attack can last anywhere from minutes to hours, and may be followed by a break or by more attacks later that day, week, or month. These bouts can stretch on for weeks or months if you have the episodic form, or years if you live with chronic cluster headaches.
This rare neurological condition is often misunderstood as “just a bad headache,” even though it ranks among the most severe pains known to medical science. In many countries, there are dedicated advocacy groups raising awareness about cluster headaches. Here in Australia, the condition is primarily discussed in social media support groups by sufferers and their families, with very little public awareness of the condition or access to effective treatment through the PBS. As a result, cluster headaches remain an enigma to most Australians.
Recently, I had an attack while working and realised I wanted to be more open about what actually happens when I get one—so people around me know what helps support me, what doesn’t, and how to respond without making things unsafe or difficult.
This is my personal experience, and it won’t apply to everyone with cluster headaches. I’m not a medical professional; nothing here is medical advice. Note: I mention self-harm during medical episodes below.
1) I often don’t realise a cluster headache is starting until it’s already taken hold
Cluster headaches come on fast, they don’t tend to build or have other associated symptoms like migraines. For me, they begin as pain behind one eye that ramps up in 5–10 minutes from “uncomfortable” to “red-hot drill boring through the eye socket.” People around me say I grip my eye (something I don’t realise I’m doing) before the tearing, congestion, and other symptoms kick in. Often I’m in the middle of something completely ordinary, like typing at my desk, when the pain spikes past the point of functioning.
2) Communication during an attack is nearly impossible
When I’m experiencing a cluster the pain is so intense that my mind cannot complete coherent thoughts. During an attack I may sound a bit delirious and confused, unable to complete sentences or to think full thoughts. It’s like my mind is in suspended animation due to the sheer level of pain that has overtaken my body. I know this inability to communicate can be distressing for people around me, so I try to relay what information I can early in an attack before the pain fully takes hold.
3) I might seem rude or anxious
When the pain short-circuits my thinking, I can come across as curt, snappy, or on edge—completely unlike my usual self. Cluster headache pain is beyond the pain of broken bones or even child birth for some. Because it is so severe and so limiting of cognitive processes in the moment, someone in the midst of an attack might come across as overly rude or anxious beyond their usual character. Please know this is unintentional and not coming from a negative place, but a place of pure agony and desperation.
4) I may harm myself without realising it
I’ve been told I sometimes hit my head with my hands and slam my face against hard surfaces during attacks. I phrase it like this because I genuinely don’t remember the harm I inflict on myself during these attacks. The pain is so intense in the moment that it appears my instinct is simply to find relief through any means, including giving myself another pain to worry about as a way to disarm my cluster’s control. It never actually works, of course, I’ve never felt relief from self-harm during an attack, but it is something that may occur regardless of my intent.
5) I don’t know what triggers an attack
Some people’s clusters are set off by alcohol, smoking, strong smells, etc. My neurologist and I haven’t found specific triggers—only that my worst period is influenced by the seasons. So please don’t suggest sleeping more, changing my diet, or other lifestyle adjustments; for me, that’s not the answer and it isn’t helpful to mention these during an attack.
6) Migraine tips don’t help
I also live with the awful reality of migraine so I am acutely aware of the difference between a migraine and a cluster. Cluster attacks aren’t relieved by lying in the dark, avoiding light, popping a Maxalt, or other migraine tricks. They require a different approach entirely so please don’t suggest tips that work for migraines. Although these suggestions come from a place of caring, they are not helpful for someone dealing with a cluster attack.
7) I don’t have quick-relief meds on hand
In Australia, acute treatment options for cluster headaches are limited. Generally speaking, the only reliably fast abortives for clusters are high-flow oxygen therapy or subcutaneous/intranasal triptans. Oxygen is hard to get prescribed for home use, and the nasal sprays and subcut triptans were discontinued by the manufacturer in 2024. Unfortunately the tablet form of triptans aren’t fast enough to help someone dealing with a cluster. Although preventive treatments for cluster headaches are now available, such as Emgality (which is not currently subsidised by the PBS for clusters) and new options being investigated worldwide like psilocybin, there are still very few effective treatments to relieve cluster headaches once they occur.
This means that when I have an attack, I either ride it out or go to the hospital for oxygen.
During an attack, I’ll usually let those around me know which of these options is best for me at that time. I personally find hospital visits quite traumatic, and it’s often hard to be discharged within 24 hours, which can cause me to miss work—so in most cases, I’ll advise against calling an ambulance.
8) I want you to support me by following my lead
Clusters feel like something out of the Hellraiser universe—but they do pass. Sometimes quickly, sometimes slowly, but they always fade… until the next one. What matters most to me as someone living with this difficult neurological condition, is that people believe my experience and let me guide the response.
If I say I can tough it out, let me. If I say I need an ambulance, please help me call one. Every attack is different. I also appreciate when people talk openly with me about what they’re like, and acknowledge that while they don’t cause injury to the body in themselves, they are still a major barrier to living a full and rich life.
If you know someone who experiences cluster headaches, don’t assume—ask them directly what they need. A simple conversation now could make a big difference when their next attack occurs.
If you’re interested in learning more about cluster headaches in Australia, the following resources may prove useful (though keep in mind, some of the information on these pages hasn’t been updated recently and may be out of date i.e. the availability of intranasal/subcut triptans).
The illustration used in this article was drawn by Malisha Shiny