🔗 Share this article

It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort around a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony around a single eye that reaches its peak 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 associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. 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 took office work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate 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 earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches 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 dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a