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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Attacks usually begin with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, 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 described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the condition explain 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 imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. 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 helpline during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But consultant specialists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are managed with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, 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 guidelines need revising to reflect a