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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an annual cycle. September and October 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 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that persists for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

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

Still, the failure to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value 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 documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent 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 advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms 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 episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a