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It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain around a single eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around erratic pain 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 family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated 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 most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a