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It was a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. It was followed by quick shocks, like electric shocks. As the school day came and went, the pain eased and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around one eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “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 dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She especially hated 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 incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing texts propose bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 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 finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the episode passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts 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 nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a