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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. Then came rapid stabs, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly 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 particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are managed with acute therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a