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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with increased 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 tried aspirin, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind a single eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on one 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 tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated 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 transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple 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 documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most 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 dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some individuals.

But leading specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a