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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around a single eye that persists for several hours.

About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable 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 simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a