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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a