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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists for three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe pain around a single eye that peaks 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 occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

One patient, 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 spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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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 experts in a book on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in treating the condition note this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a