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It was a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid shocks, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the condition, and men are more often affected. Attacks usually start with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began 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 having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

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 ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from 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 awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment 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 options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a