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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms 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 portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical texts propose bizarre treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a