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It began on a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind one eye that persists up to three hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, 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 steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a