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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on pain 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.

This condition typically begin with severe discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with abrupt, severe pain around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding 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 attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable 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 small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, 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 discomfort is that reduces nerve signals.

The national guidance need revising to reflect a