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It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.

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

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a