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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. It was followed by rapid stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind one eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly hated 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 most severe 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 facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international headache 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. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a