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It began on a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. Then came rapid stabs, like lightning bolts. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically start with sudden, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its effect. She especially 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 paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate 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 the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a