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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. It was followed by quick jolts, like electric shocks. As the school day progressed, the pain eased and then returned with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst 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 episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists 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 bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are handled with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a