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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my right eye. It was followed by rapid shocks, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain around a single eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches typically begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. 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 took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple 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 facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Historical medical texts suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, 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 season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen therapy and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a