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It began on a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. Then came rapid shocks, like electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain around one eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Short bouts with occasional episodes are handled with acute therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a