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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, 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 hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

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

Cluster headaches 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 issue with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed 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 pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with infrequent episodes are managed with abortive therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a