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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that lasts up to several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, 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 put down 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 hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a