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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers 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 partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent 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 recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s 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.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short bouts with occasional attacks are handled with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a