🔗 Share this article

It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain around one eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable pain took its effect. She particularly hated 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 steals from you of the simple 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 portable toilet.

---

Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

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

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a