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It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues 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 the episodic form, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

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

Neurologists say wait times in diagnosing and managing happen 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 head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable 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 twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered 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 neurologists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a