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It was a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began 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 teens, like several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. 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 children during the paralysis caused by the most severe episodes. “It steals from you of the simple 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 documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent experts in treating the condition note this.

In the late 1990s, researchers released 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 journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy 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 attacks of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a