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It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks typically begin with sudden, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers 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 description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical records suggest bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including 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 describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a