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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around a single eye that persists up to several hours.

About one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, 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 spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis 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 remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined 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 decreases nerve activity.

The national guidance need revising to reflect a