🔗 Share this article

It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by quick jolts, like electric shocks. As each class progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that autumn, 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: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort around one eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with abrupt, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding 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 took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional attacks are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a