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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. Then came rapid stabs, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain around one eye that lasts up to three hours.

About one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks typically begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw 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 adolescence, like several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support 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 office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some people.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a