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It began on a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. Then came rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with intense pain around one eye that persists up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, 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 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 across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with acute treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a