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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually start with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize life around unpredictable pain took its toll. She particularly disliked 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 incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described 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 entity who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired 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 cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode passed.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a