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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by rapid shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with abrupt, severe agony focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient medical records propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, 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 recovered.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a