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It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many 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 interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

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

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

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

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a