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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. Then came quick shocks, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain behind a single eye that persists for several hours.

About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records propose unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered 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 some people.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a