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It began on a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick shocks, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain behind a single eye that persists for several hours.

About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Prominent specialists in treating the disorder note this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. 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 support line during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a