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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came quick shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. 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.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly 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 worst episodes. “It steals from you of the simple liberties 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 history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

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

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with abortive therapy alone. Longer or more intense bouts require preventives 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 national guidelines need updating to reflect a