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It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came quick jolts, like electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain around one eye that lasts up to three hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, 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 symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties 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 portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists 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,” 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 crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with occasional attacks are managed with acute therapy alone. More prolonged or more intense bouts 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 head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a