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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain behind a single eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with sudden, severe agony focused on a single eye that reaches its peak 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 associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties 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 description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. 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. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

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

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a