🔗 Share this article

It was a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. This was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts 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 perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for 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 remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation 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 progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a