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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around one eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs 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 attack inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist 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 most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, 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 signals.

The official guidance need updating to reflect a