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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking 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. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize life around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published 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, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a