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It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and continues for as long as 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 an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered 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 people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a