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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually begin with abrupt, severe agony focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky 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 absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around erratic pain took its toll. She particularly 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 liberties we don't appreciate 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 throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

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

The disorder were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with occasional attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a