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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks typically begin with sudden, excruciating agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms 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 portable toilet.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only formally classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, 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.

In spite of such advances, diagnosis 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 underwent four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a