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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in 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 shower, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort behind a single eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks typically begin with abrupt, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small 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 facility.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are managed with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a