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It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. Then came quick shocks, similar to lightning bolts. As each class progressed, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort behind one eye that persists up to three hours.

About one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time 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 face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. 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 condition worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with acute therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a