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It was a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. Then came quick jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain around a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped 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 floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly 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 worst episodes. “It steals from you of the small liberties we don't value 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 earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical healing records propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What season? 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 referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are managed with acute therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a