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It was a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks typically start with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support 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 took office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially 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 incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical medical records propose unusual treatments for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen 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 primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a