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It began on a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. Then came rapid jolts, like lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around erratic 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 incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a