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It was a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain around a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings 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 recovered.

In spite of such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

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

But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more intense bouts 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 head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a