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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. Then came rapid shocks, like lightning bolts. As each class came and went, the pain eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain around one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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

Ancient healing texts suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a