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It began on a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. Then came rapid jolts, similar to electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

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

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published 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 pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur 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 tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined 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 decreases nerve activity.

The official guidelines need updating to reflect a