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It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

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

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky 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 recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, 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 discomfort is that reduces nerve activity.

The official guidance need revising to reflect a