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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. This was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain around a single eye that persists for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity 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, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced 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 pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a