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It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. Then came quick shocks, like electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort behind one eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

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

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. 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 incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially 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 delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the attacks 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 circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired 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 reduces nerve signals.

The official guidance need revising to reflect a