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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my one eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, severe pain around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

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

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a