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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 group of students, when a sudden pain erupted behind my one eye. Then came rapid stabs, similar to lightning bolts. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually 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 clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties 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 documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a