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It began on a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists for three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

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

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a