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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted 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 understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around erratic pain took its toll. 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 steals from 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 attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging 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 unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, 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 guidance need updating to reflect a