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It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came quick stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain behind one eye that persists up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks usually begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began 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. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to organize life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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

Ancient medical records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by global headache committees 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 supplies blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted 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 responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a