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It was a gloomy weekday morning in the autumn of 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 jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. 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 agony in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with abrupt, severe agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. 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 daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

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

The disorder were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study 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 circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a