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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. Then came quick shocks, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain around a single eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack 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 Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical records propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a