🔗 Share this article

It was a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by quick shocks, similar to electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, severe agony around one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted 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 exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a