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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my one eye. Then came rapid stabs, like electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated 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 paralysis caused by the worst episodes. “It robs you of the small 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 described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with acute therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a