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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation erupted behind my right eye. This was followed by quick jolts, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around one eye that persists for several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly 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 remembers winning tickets for a significant 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 Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain 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 data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the attack eased.

National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a