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It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor 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 disappearing daily at specific hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, 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 twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a