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It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, 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 shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

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

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a