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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with sudden, severe agony focused on a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport 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 fortunate to find such an exceptional person,” she says. Hobbs took clerical 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 2002 at a specialist hospital.

Still, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest account 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 records propose unusual remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? 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 referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a