🔗 Share this article

It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came quick shocks, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

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

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with abortive therapy only. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a