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It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. Then came quick shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort behind a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

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

The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

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

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a