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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by rapid jolts, like lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain around one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Attacks usually start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, 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 mistook her attacks as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially 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 most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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

Ancient healing records propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

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 episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists 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 bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications 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 decreases nerve activity.

The national guidelines need updating to reflect a