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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. 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 train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually begin with sudden, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. 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, in her seventies, a chronic 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 attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst 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 major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing records propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a