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It was a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken 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 found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially disliked 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 incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

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

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

Cluster headaches were only formally classified by global medical committees 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 delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a