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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. It was followed by rapid jolts, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain around a single eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms started 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 symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are managed with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a