🔗 Share this article

It was a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain around a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often affected. Attacks typically begin with sudden, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are handled with abortive therapy 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 nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a