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It began on a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. It was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading specialists in treating the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a