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It began on a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind a single eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit 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 triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

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

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with infrequent episodes are managed with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a