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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. Then came quick jolts, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind one eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate 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 absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient healing records propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, 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 characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug 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 neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a