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It was a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, 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 headaches.

This condition typically begin with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks usually begin with abrupt, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored 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 number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

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

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent 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 cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with occasional attacks are managed with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a