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It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks usually start with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, 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 liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 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 teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a