🔗 Share this article

It began on a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by quick stabs, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst 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 major concert, only to have an attack inside a portable toilet.

---

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

Historical medical texts propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in treating the condition note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. 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 discomfort is that decreases nerve activity.

The official guidance need updating to reflect a