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It was a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. Then came quick shocks, like lightning bolts. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks usually begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally 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 issue with a major artery that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a