🔗 Share this article

It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid stabs, like lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that persists for several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support 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 found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. 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 paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

---

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

Historical medical records suggest bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a research project 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 a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with abortive therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a