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It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around a single eye that persists up to several hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated 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 worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified 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 key artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head 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 stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a