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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. It was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays 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 primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a