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It was a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my right eye. Then came quick stabs, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind one eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked 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 worst episodes. “It steals from 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 episode inside a facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

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

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe bouts require preventative medications 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 discomfort is that reduces nerve signals.

The national guidance need updating to reflect a