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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came quick shocks, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind one eye that persists for several hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with sudden, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate 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 attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

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

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

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult 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 pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, 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 skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a