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It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by quick stabs, like electric shocks. As the school day progressed, the pain eased and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; others have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, 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 remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches 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 teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a