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It was 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 sensation sprang behind my right eye. It was followed by rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared 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 anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain around one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually 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 relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis 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 winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.

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 twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater 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 guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with occasional attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a