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It was a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with increased intensity. Multiple 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 paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around one eye that peaks 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 tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable 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 simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the condition note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a