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It began on a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After having 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. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

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

It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, scientists 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 major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition 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 dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer 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 me through oxygen therapy and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a