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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my right eye. Then came quick stabs, like lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Attacks usually begin with abrupt, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

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

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After having sherry 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. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in treating the disorder explain this.

In 1998, scientists released the results 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 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. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with abortive therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a