New research reveals 85% of cluster headache sufferers struggle at work, nearly 20% have lost their jobs and only 6% find treatment effective. Now Australia is trialling what people with cluster headache actually want.
Australians living with cluster headache, one of the most painful conditions known to medicine, are calling for research into psilocybin. A new survey has found that 82% of participants want clinical trials of the psychoactive compound found in magic mushrooms.
The findings, published in Headache: The Journal of Head and Face Pain, reveal deep dissatisfaction with current treatment options. Only 6% of the 202 participants surveyed considered their treatment "very effective," while 35% rated it as "not at all effective" or "somewhat ineffective."
Cluster headache is nicknamed "suicide headache" because of its severity: 55% of sufferers report suicidal thoughts. The condition is more common in men than women, costs people with cluster headache an average of $20,000 a year and has left nearly one in five unemployed.
Ben Fleming, 37, has lived with cluster headache since 2020. His longest remission in five years was barely a week.
"I will try anything.
It creeps up on you. It started as a small imposition and has become a massive one.
The biggest impact is on my family. I have two teenagers, 12 and 14, who are unfortunately very used to hearing their dad in severe pain.
By:Ben Fleming
Cluster headache case study
The condition has created what Fleming describes as "a form of agoraphobia": a fear of being away from his oxygen tank and medication. He recently had to call an ambulance mid-attack because he had run out of oxygen.
"My stance has always been that I will try anything if it can prevent, pause, or delay these attacks. If we can turn this pain into data that helps someone else, that's a positive.
By:Ben Fleming
What participants told researchers
The survey captured the experiences of 202 Australians with cluster headache between February 2024 and October 2025. The findings are as follows:
- 85% reported difficulties at work
- Nearly 20% had lost their jobs due to the condition
- 85% reported mental health conditions (stress, anxiety, depression) they attributed to their headaches
- 74% cited treatment ineffectiveness as their primary challenge
- 62% expressed interest in participating in clinical trials
- 66% were "very interested" in psilocybin research specifically, more than any other intervention
When asked what research areas mattered most, 90% said understanding the underlying causes of cluster headache was "very important," followed by developing more effective medications (88%) and educating doctors and the public (82%).
The burden extends beyond attacks themselves. People with cluster headache report constant anxiety about when the next episode will strike, avoidance of potential triggers and an inability to plan their lives. Researchers call this "interictal burden."
"We need to fill in the gaps.
This survey tells us that participants are desperate for new options and that they're willing to participate in research to find them.
Some studies have shown psychedelics can have a 'cluster busting' effect, reducing or eliminating attacks after just a few doses. But clinical evidence remains limited. With only a handful of preventive treatments available and the first-line option proving ineffective for more than half of people with cluster headache, many people resort to self-medicating with unregulated sources."
By:Dr Faraidoon Haghdoost
Research Fellow at The George Institute for Global Health
In response to this unmet need, The George Institute has secured funding through the Medical Research Future Fund for the PEACE trial (Psilocybin Efficacy and Acceptability on Cluster Headache Episodes), which will be one of the world's first rigorous clinical trials testing psilocybin as a preventive treatment for cluster headache.
"Our aim is to provide the rigorous evidence needed to inform safe prescribing and, ultimately, give people with cluster headache an effective treatment option.
By:Dr Haghdoost
Australians with cluster headache interested in supporting or participating in future research can complete a survey at: [https://unsw.au1.qualtrics.com/jfe/form/SV_9nv76r3o53XCjQi]
