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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. It was followed by rapid jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around one eye that persists 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, severe agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. 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 episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis 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 recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by global 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 which supplies blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a