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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating pain around one eye that peaks within a short time and lasts 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 perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to organize life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs 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 episode 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 ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account 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 fixed hours”.

The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a