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It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain behind a single eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan social events, 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 simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, 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 symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced 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 molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a