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It began on a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind one eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks usually start with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, 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 intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical records suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack 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. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a