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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came rapid shocks, similar to electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: 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 referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study 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 thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable 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 family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other primary headache 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 much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a