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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. This was followed by rapid jolts, like electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe pain around a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, 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, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground 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 many triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities 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 cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.

National 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 choices include verapamil, which reportedly soothes the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a