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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. This was followed by rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around a single eye that lasts for three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, 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 attacks as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially 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 major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one 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 diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition 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 teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. 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 consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are managed with acute treatment only. Longer or more severe 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 bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a