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It began on a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind one eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient healing records propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity 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 advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are handled with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of 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 activity.

The national guidelines need revising to reflect a