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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. This was followed by quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a