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It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation sprang behind my right eye. Then came rapid stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around a single eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, 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 felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “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 confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a