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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple 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 facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, 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, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen 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 apparently helps manage the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with infrequent episodes are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a