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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that lasts for three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “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. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, 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 small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

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

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

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 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode passed.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a