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It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. This was followed by quick stabs, like electric shocks. As each class came and went, the pain subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort around a single eye that persists up to three hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe pain around one 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 arrives in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize 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 most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, scientists published the results 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 journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, 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 one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with occasional episodes are handled with abortive treatment only. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a