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It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind a single eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many 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