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It was a overcast weekday in the 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. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically start with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

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

Specialists say wait times in diagnosing 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 conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a