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It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She especially disliked 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 robs 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 portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical healing records propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

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

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a