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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by quick shocks, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe pain around a single 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 associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic 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 out of 10, more severe than bone fractures or pancreatitis. Another 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, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a