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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain around one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, severe agony focused on a single eye that peaks within a short time 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, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky 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 appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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

Ancient healing records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a