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It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks started 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 symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport 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 understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of 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 adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a