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It began on a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. This was followed by quick jolts, like lightning bolts. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on agony in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain behind a single eye that persists for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Attacks usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated 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 took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family 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 attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, 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.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are handled with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a