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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. This was followed by quick shocks, similar to lightning bolts. As the school day came and went, the pain eased and then came back with increased intensity. 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 agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain 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 worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions 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 describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a