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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by rapid jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently 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 routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the condition, and men are more often affected. Cluster headaches usually begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, 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 value 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 described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a