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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain around a single eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic 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 put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She particularly 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 steals from you of the simple liberties we don't appreciate 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 documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a