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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 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.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family 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 clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple 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 facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, 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 molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a