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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my one eye. Then came rapid stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan life 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 cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical records suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor 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 agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a