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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. Then came rapid jolts, like electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts up to three hours.

About one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate 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 described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers 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, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are managed with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a