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It began on a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind one eye that persists for three hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially hated 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 paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing records propose bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, 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, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a