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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind a single eye that persists up to several hours.

About one in 1,000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan life 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 cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack 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 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

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

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity 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, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a