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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my right eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, 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 late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort around a single eye that lasts up to several hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks usually start with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken 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 office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children 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 remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific 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 issue with a key artery that supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 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 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a