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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by rapid stabs, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% 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 hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

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

Still, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a