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It was a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the pain eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: 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 finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

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

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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 topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, 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.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with acute therapy only. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a