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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain around a single eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, 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 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a