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It began on a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation erupted behind my right eye. Then came rapid shocks, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort behind a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple 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 portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are handled with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a