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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain behind one eye that persists up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, severe pain focused on a single eye that peaks 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 face sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky 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 time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major 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 originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing records propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor 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 daily at specific hours”.

The disorder were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, 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.

Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a