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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that lasts up to three hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms 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 throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, 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.

In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a