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It was a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks typically begin with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with occasional attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a