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It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. Then came quick jolts, like lightning bolts. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe pain around a single eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to organize life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, 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 value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: 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 nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a