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It began on a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around one eye that persists up to three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually start with sudden, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple 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 facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

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

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a