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It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain behind 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 typically start with abrupt, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical 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 2002 at a national neurology center.

Nevertheless, 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 co-worker, 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 simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed activation 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 advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a