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It began on a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient healing texts propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a