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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery 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 pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties 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 the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading experts in treating the condition note this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a