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It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. Then came rapid shocks, like electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort around one eye that persists up to three hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony focused on one eye that reaches its peak within a short time 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 facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for 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 recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

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

The disorder were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 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 teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a