🔗 Share this article

It was a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by quick shocks, like electric shocks. As each class progressed, the pain subsided and then returned with increased force. Four 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 took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. 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 GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that persists for three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

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

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated 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 found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs 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.

---

Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

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

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy 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 nerve block injection 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