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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort behind one eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation 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 episode inside a facility.

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Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a