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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family 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 obtaining tickets for a significant 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 comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a