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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick jolts, like electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with abrupt, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, 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 winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what some observers would classify 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 initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a