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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my one eye. Then came rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, 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 symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

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 teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a