🔗 Share this article

It was a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around one eye that persists for three hours.

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, excruciating pain around one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing records propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk cures.

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

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a