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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a