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It began on a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe 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 significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a