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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major 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 Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some people.

But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional episodes are handled with acute therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a