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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. It was followed by quick stabs, like electric shocks. As each class progressed, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind one eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly 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 liberties we don't appreciate until they're gone,” she says. She recalls obtaining 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 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, 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 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a