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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by quick shocks, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks 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 children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate 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 described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a