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It began on a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came rapid shocks, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that lasts for several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically begin with sudden, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, 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 small liberties 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 first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that supplies 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 triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession 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 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a