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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on agony 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 often start with severe pain around one eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with abrupt, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around erratic attacks 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 children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published 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 journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: 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 tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many 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 activity.

The official guidance need updating to reflect a