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It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. Then came quick stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind one eye that persists for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Attacks typically start with abrupt, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. 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 took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks 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 looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Historical medical records propose bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

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

Cluster headaches were only formally classified by international headache committees 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 head. Leading experts in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some individuals.

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 bout determines the treatment.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a