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It began on a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. This was followed by rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind one eye that persists for several hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating 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 several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable attacks took its toll. She especially disliked 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 steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major 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 deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a