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It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

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 ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, 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 simple freedoms 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 described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

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

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a