🔗 Share this article

It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by rapid stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort behind one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options 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 clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a