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It was a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my right eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain behind one eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from 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 facility.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a