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It began on a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my right eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain around one eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks typically start with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as 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 an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, 74, a long-term patient 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 spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic 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 cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a