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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind a single eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She particularly 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 incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining 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 ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

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

It was a Dutch doctor 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 happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, 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.

Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing 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 eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a