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It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain behind a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some experts would classify as a headache disorder. 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 doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a