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It began on a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain sprang behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, severe agony around one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes 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 believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in treating the condition note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks 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 correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most 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 dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a