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It was a dreary weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by rapid jolts, like lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind a single eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support 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 office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family 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 recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some individuals.

But leading neurologists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a