🔗 Share this article

It began on a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort around a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks typically begin with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw 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, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient 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 features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a