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It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its toll. 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 incapacitation 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 significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk 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 happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a