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It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, severe pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification 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 underwent four operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are handled with abortive treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a