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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation bloomed behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started 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 causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. 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 found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing texts suggest unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results 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 prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

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 recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. 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 attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a