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It was 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 right eye. It was followed by quick jolts, like electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of long pain-free periods.

What unites 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 suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She especially disliked 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 small 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 documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records propose bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major 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 felt better.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? 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 the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, 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 teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession 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 early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with occasional attacks are handled with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a