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It began on a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort around one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually 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 moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical texts propose unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, 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.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists 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 early 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with occasional attacks are managed with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a