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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 intense sensation sprang behind my one eye. It was followed by quick stabs, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around one eye that persists for several hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, excruciating pain around one eye that peaks within minutes 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 facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer 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 attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, 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 specialist neurology center.

Nevertheless, the failure 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 family during the incapacitation 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 major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a