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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain around one eye that lasts for three hours.

About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks usually start with abrupt, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell 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 hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small 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 portable toilet.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. 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 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a