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It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

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

Cluster headaches often start with severe discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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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 publication on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a