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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis 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 remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches 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 teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are handled with abortive treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a