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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around a single eye that persists up to three hours.

About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed 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, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are handled with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of 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 national guidance need revising to reflect a