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It began on a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by quick shocks, similar to electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain around one eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable 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 small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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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 authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a