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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, 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 intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around erratic attacks took its toll. She especially disliked being unable to plan outings, 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 steals from you of the small liberties we don't value 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 throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a