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It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my one eye. Then came quick stabs, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around a single eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky 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, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major 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.

In spite of such advances, diagnosis remains delayed. One man's attacks 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 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted 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 replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a