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It began on a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain around a single eye that persists up to three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent 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 illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers 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 specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a