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It began on a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, severe agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account 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”.

The disorder were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, 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 discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are managed with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a