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It was a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

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

Cluster headaches often start with severe discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks usually begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple 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 throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk 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 “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in treating the disorder note this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite 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 underwent multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a