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It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

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

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her 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 misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a