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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by quick shocks, like electric shocks. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain around one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts 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. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs 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 episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some 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, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a