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It began on a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook 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 understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

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

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a