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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind one eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic attacks took its effect. She especially hated 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 paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

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

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a