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It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally 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 hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties 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 the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches 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 in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started 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 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired 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 discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a