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It was a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my right eye. It was followed by quick jolts, like lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain around one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually start with sudden, severe agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, 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 freedoms 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 portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his victims' heads.

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

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major journal, 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.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with abortive treatment 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 greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a