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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 sensation erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks usually begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical records propose bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a