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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid jolts, like electric shocks. As the school day came and went, the pain eased and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation 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 advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. 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 episode passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some people.

But consultant neurologists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are handled with acute therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. 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 decreases nerve signals.

The national guidance need updating to reflect a