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It began on a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid jolts, similar to electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind one eye that persists up to three hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

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

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with abortive therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a