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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came rapid shocks, like electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky 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 value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent episodes are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a