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It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor looked up 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 headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a