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It began on a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured 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 recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult 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 believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known people.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a