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It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my right eye. It was followed by rapid jolts, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort behind one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks 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 many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient medical records propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a