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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky 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 absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate 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 documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the findings 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 prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with occasional attacks are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a