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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around a single eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. 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 spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for 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 remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, 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 headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that sufferers 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 apparently helps manage the attacks of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a