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It was a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned 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 cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that persists for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support finally 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 relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. She particularly disliked 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 most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with abortive therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a