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It was a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that persists up to three hours.

About one in 1,000 people suffer by the disorder, and males are more often affected. Attacks usually start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in treating the disorder note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a