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It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came quick shocks, like electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches typically start with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. 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 clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short cycles with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a