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It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain behind one eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, 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 children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially 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 which delivers blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, 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 sinus problems; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a