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It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind one eye that persists for several hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe 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 portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a