🔗 Share this article

It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my one eye. Then came rapid stabs, like lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain around a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with abortive therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a