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It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

About 1 in 1000 people are affected by the condition, and males are more often affected. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, 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 remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a