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It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing 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 attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a