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It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, 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 robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor researched 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 severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a