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It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a