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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my right eye. Then came rapid jolts, like electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort around one eye that persists up to three hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. 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 moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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

Historical healing records suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the condition note this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a