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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst 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 attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing 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 episodes in a imaging machine. The results, 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 deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted 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. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a