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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by rapid stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating pain focused on 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 multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

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

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, 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 the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a