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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my one eye. Then came quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind a single eye that persists up to several hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe pain around one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity 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.

Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a