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It began on a overcast Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. This was followed by quick shocks, similar to electric shocks. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw 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 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 intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, 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 value 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 documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris'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 had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a