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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my right eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “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. Drinking in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally 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 hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured 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 deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment 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 common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition 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 pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a