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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came quick shocks, reminiscent of 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 hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, 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 small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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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 attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a