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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with greater force. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort around one eye that persists for three hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support 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 moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. 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 discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: 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, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a