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It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. This was followed by quick stabs, like electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort around one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually 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 office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic 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 incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major 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 comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious 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 vanishing each day at fixed hours”.

The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a