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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. It was followed by quick jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the failure to organize life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe 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 episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description 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 entity who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

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 severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a