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It began on a overcast Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks 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 concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs 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 documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a