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It began on a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain behind a single eye that persists for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe agony focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily 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; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description 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 malevolent spirit who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by international headache societies in 1988. From the 1960s 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 treating the disorder note this.

In 1998, researchers published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 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 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a