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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started 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 worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated 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 office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family 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 winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a