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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks typically begin with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms 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 facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, 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 season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional attacks are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many 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