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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind one eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, severe pain focused on a single 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 perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around erratic attacks took its toll. She especially 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 worst episodes. “It robs you of the simple freedoms we don't value 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 described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Historical healing texts propose bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers 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 activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

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

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled 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 Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a