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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Attacks typically start with abrupt, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest unusual remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Leading specialists in treating the disorder explain this.

In 1998, researchers published the results of a study for which they had triggered attacks 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 deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a