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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. Then came quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent 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 condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout 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 malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity 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, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some people.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a