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It was a overcast Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. Then came quick shocks, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain around a single eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small 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 the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

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

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, 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 modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a