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It began on a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick stabs, like lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, severe pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major 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 comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical records propose bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published 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 reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority 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 charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidance need updating to reflect a