🔗 Share this article

It began on a dreary weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started 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 teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic pain took its effect. 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 children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European 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 fixed hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading experts in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a