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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the pain eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain around one eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more often affected. Attacks usually start with abrupt, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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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 experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading neurologists argue 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.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a