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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. It was followed by quick stabs, like electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind one eye that lasts up to several hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks typically start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable pain 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 paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in treating the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her 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 pain. She thinks the dental profession 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 attack in 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a