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It began on a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain sprang behind my one eye. Then came rapid stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort around a single eye that lasts for three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks usually start with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms 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 description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what some 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 superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with acute therapy only. 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 injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a