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It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four 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 unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Cluster headaches usually begin with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. 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 condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “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 dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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

Ancient medical texts propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the attack eased.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a