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It began on a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. Then came rapid shocks, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain behind a single eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father 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 absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life 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 incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

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

The disorder were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published 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 deactivation when they recovered.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a