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It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain sprang behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort around a single eye that persists up to three hours.

About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for 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 recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

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

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with infrequent attacks are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a